DANCING WITH THE SANDMAN

Don't Inject Me!

2009-09-01T20:24:00.001+01:00

Trial Date Set for Kay Gilderdale

2009-08-18T12:56:00.003+01:00

PERMISSION TO FORWARD, RE POST AND USE IN NEWSLETTERS FOR MAXIMUM EFFECT

Following the death of her beloved daughter, Lynn, for whom she cared for 17 years, Kay Gilderdale has pleaded guilty to aiding and abetting suicide, though not guilty to attempted murder and another count of aiding and abetting attempted suicide.

Regrettably, the Crown Prosecution lawyer declined the invitation of Judge Richard Brown to drop the charges because he said it was not in the public interest and a trial is scheduled for 12 January 2010.

The Crown Prosecution Service, however, could choose to drop the case at any time.

The Director of Public Prosecutions, Keir Starmer, QC, did intervene in the case against Mark and Julie James, the parents of Daniel James, the rugby player who sustained dreadful injuries and wished to die.

Since MS sufferer Debbie Purdy won her case in the House of Lords for clarification of the law about assisted suicides, it would be an appropriate time to write to the DPP with your views about assisted suicides and appeal for his intervention in the case against Kay. May I suggest that you emphasise that you do not wish to discuss anything about the case, since it is before the courts but just plead that the DPP intervenes to have the case dropped. Since there will have to be a debate in the House of Commons before any change in the law, you should copy your letter to your MP.

My appeal is for at least one person in each of the 650 constituencies to write, in order to reach every MP and maximise support for Kay.

The address for letters is

Keir Starmer, QC,
The Director of Public Prosecutions
Crown Prosecution Service
50 Ludgate Hill
London
EC4M 7EX

You can find your MP here http://findyourmp. parliament. uk/
The Postal Address is
Name of your MP
MP for Your Constituency
House of Commons
London
SW1A 0AA
(Your letter will reach your MP even when the House is not sitting)

If you wish to make your support public and to encourage others to follow your example, please forward it to me and we shall put it on a section on our website with all the others who do the same. There is also a page on Facebook called Prosecuting Kay Gilderdale is NOT in the PUBLIC interest
Click here
http://www.facebook .com/home. php#/group. php?gid=10357574 7984&ref= ts

Will you do it now? I can't think of anything more important just now.

Love & best wishes
John
drjohngreensmith@ mefreeforall. org
Dr John H Greensmith
ME Free For All. org

Aftermath of the recent application for Judicial Review

2009-08-14T00:41:00.003+01:00

MAY BE REPOSTED

Aftermath of the recent application for Judicial Review

I believe the publication and dissemination of the "Statement from
Professor Malcolm Hooper" of 29 July was ill advised. This is not meant in
any way as a criticism of Prof Hooper himself, for whom I have the greatest
respect, nor of those who published the statement on the internet, and
should not be construed as such. I nevertheless believe this action to have
been an unfortunate mistake.

The problem is that the statement appears to make the assumption that its
readers will be fully conversant with what it refers to, but its
publication has had the effect of sowing seeds of doubt, mistrust and in
some quarters even paranoia in the M.E. community. Instead of dispelling
misunderstanding, it has inadvertently created more.

The statement begins by making reference, without actually identifying it,
to a video on YouTube, described as "erroneous" and "defamatory" .

For my own part, not having access to YouTube, I sought clarification of
the statement on the internet discussion group where I had read it. But far
from informed responses, I attracted instead unwarranted insults,
insinuations, defamation, censorship of my posts and the threat of being
barred from the group - a threat which was very soon carried out. (I found
this development itself to be alarming and worrying, more so since I've
realised others are also being subjected there to this kind of treatment.)

In the meantime I finally managed to view the YouTube video in question. I
watched it several times over and became even more nonplussed, since the
video, which consists of someone talking to camera about the Witness
Statement of the solicitor acting for NICE in the recent application for
Judicial Review, did not strike me so much as an 'attack' but more a
salutary comment on technical and tactical considerations when one seeks to
pursue litigation.

It deals with aspects of the Witness Statement outlining activities of
parties involved with the Claimants' team which had resulted in the
granting of a Wasted Costs Order (to the tune of £50,000, as it turns out)
against the Claimants' solicitors.

Further information on this episode is provided in the 29 July statement
itself, which reveals that the Claimants, in the wake of the hearing, have
issued complaints to the Legal Complaints Service and the Bar Council
Standards Board about the conduct of their own solicitor and barrister.

It was inevitable that comment and debate on all of this would follow on
the internet in the various discussion groups. Unfortunately, since one or
two of these groups operate an unofficial policy of banning any mention of
a particular campaigning web site (although this restriction is, in
reality, only selectively applied), this has had the inevitable consequence
of hampering and distorting free expression and legitimate debate, further
resulting in polarising of views within the M.E. community and the
engendering of artificial and unnecessary animosity between various parties.

All statements, pronouncements and commentary on any aspect of the recent
application for Judicial Review of NICE's 'CFS/ME' Guideline aside, one
need only read the actual Approved Judgment of Mr Justice Simon to
understand why the application failed.

(This judgment is available on the internet, but the only location I am
aware of I cannot mention here, since it might result in this entire
comment of mine being blocked on certain internet discussion groups, which
itself illustrates the point made above about the hampering of legitimate
debate.)

It is clear that technical and tactical errors were made in pursuit of this
application for Judicial Review of a NICE Guideline. No one is perfect, but
where the responsibility for this may or may not lie is not the real issue
here; what is important is that valuable lessons can and should be learned
for the future of campaigning on behalf of the M.E. community. But these
lessons cannot be learned if discussion of the issues raised is to be
censored, controlled and suppressed.

To err is human. All of us are capable of making mistakes and it cannot be
taken for granted that anyone's 'status' within the M.E. community
guarantees that whatever they say or do is always correct or unquestionable.

What should be relevant and valuable debate on the internet is often
reduced to personal comment, through unquestioning support for certain
groups or individuals, or, conversely, through hostility born of prejudice.
This is neither useful nor helpful.

The fact that it came as a complete surprise to most people shortly before
the first hearing (at which permission was sought to proceed with an
application for Judicial Review) that there was a second application in the
pipeline besides the one which had been publicised for some time already,
serves to illustrate this point. Speculation and rumour began to abound,
exacerbated by the lack of public explanation for this development.

The 'M.E. community' is not any kind of cohesive organisation, but it can
sometimes appear to be akin to something like a Masonic lodge, with
different degrees of 'initiation' and inner circles within inner circles,
where information is withheld from those not included in various cliques,
who, in turn, often eye each other with suspicion and mistrust. This is
getting us nowhere except going round in circles.

We should consider all relevant information first hand, for ourselves, and
not rely on others to tell us what or who to believe or support. This is
not a religious crusade we're involved in, but a political one. Everything
has form and content, and it is important to distinguish these two aspects:
we sometimes have to look beyond the language used and concentrate on
what it is that is actually being said.

The aftermath of the Judicial Review application has made it clear that
what is needed more than ever in the M.E. community is not knee-jerk
reaction and assumption, but openness and transparency from all.

John Sayer

Act Now To Prevent UK Disability Living Allowance From Being Axed

2009-08-11T00:33:00.001+01:00

PERMISSION TO REPOST

Scroll down the website to read much more news on
One Click or go to the News Archives
http://www.theonecl ickgroup. co.uk/news. php

SUMMARY

* Act Now To Prevent UK Disability Living Allowance From Being Axed
http://tinyurl. com/nhfvcb
LOGO
Time running out is running out to save Disability
Living Allowance and Attendance Allowance from being
axed. Claimants have just 100 days to prevent their
DLA and AA being abolished. A government green paper
has revealed proposals to stop paying `disability
benefits, for example, attendance allowance'' and
hand the cash over to social services instead.
Find out more about the proposed abolition of
DLA and AA and how you can join our campaign
to fight back.

Steve Donnison, Benefits & Work

* UK Social Worker Struck Off For Abuse Of Young Girls
http://tinyurl. com/msf7lg
LOGO
Christopher Hardman, 55, from Batley, West Yorkshire
has been found guilty of misconduct after encouraging
teenagers to pose topless for photo shoots. "This was
an elaborate and sophisticated scheme deliberately
targeting young women, the majority of whom were
service users and two of whom were vulnerable," said
Sarah Phillips, GSCC committee chairman.

BBC News
Related Links:
* UK Social Workers - Unkindness, Crime, Corruption And Porn Claims
Norman Silvester, Sunday Mail
http://tinyurl. com/mso2jm
* Social Worker Struck Off After Child Sex Offences
Editorial, Lynn News
http://tinyurl. com/ksl4wg
* UK NHS Database - Open Season For Paedophiles, Estranged Spouses, Social Workers Et Al
Dave Blackhurst, The Sentinel
http://tinyurl. com/n8z3aw

* One Click Information Release -
CFS/ME NICE Guidelines, Judicial Review
http://tinyurl. com/mdyeed
LOGO
I would like to take this opportunity to write to
publicly thank all those who have sent such kind
words to One Click and my family over our part of
the Judicial Review of the CFS/ME NICE Guidelines.
The Saunders Law Partnership, our lawyers who handled
our part of the Judicial Review, are now featuring
the JR on their website. Publication of 'How The
Judicial Review Of The CFS/ME NICE Guidelines Was
Lost' (http://tinyurl. com/mwztsk) has naturally
generated a stream of vicious and defamatory
abuse emanating from the associates of solicitors
Leigh Day & Co's clients Douglas Fraser, Kevin
Short and their advisors. The worst parts of these
actions and defamation have been forwarded to the
Solicitors Regulation Authority (SRA). One Click
has formally requested a statement from Leigh Day
Senior Partner Martyn Day and Jamie Beagent in
relation to the debacle of this case that has
resulted in them paying a fine to NICE of £50,000
in the form of a Wasted Costs Order. Contact
details of the aforementioned are now published.

Information Release, Jane Bryant, The One Click Group
Related Links:
* How The Judicial Review Of The CFS/ME NICE Guidelines Was Lost
Jane Bryant, The One Click Group
http://tinyurl. com/mwztsk
* Heartfelt Thanks To TOCG For The NICE CFS/ME JR Review
Lara, Health Advocate
http://tinyurl. com/ly5954
* NICE And Their Irrational CFS/ME Guidelines
Dr Rita Pal, NHS - Behind The Headlines
http://tinyurl. com/lsk4ft

Statement from Professor Malcolm Hooper

2009-07-30T18:46:00.003+01:00

Permission to Repost

http://www.meaction uk.org.uk/ Statement_ re_videos_ by_MH.htm

STATEMENT FROM PROFESSOR MALCOLM HOOPER

I am dismayed by the YouTube attacks on Margaret Williams and wish to place
on public record that to my certain knowledge they are both erroneous and
defamatory. Those making these unfounded accusations are doing a great
disservice to the whole ME community.

People have a right to know the facts. Margaret Williams does occasionally
use and has published material using the pseudonym Julia Hamilton.

The exhibits to the witness statement of NICE's solicitor Stephen Hocking
from Beachcroft LLP in relation to NICE's allegations about Julia Hamilton
are also seriously erroneous.

Using the name Julia Hamilton, Margaret Williams did indeed contact NICE and
the Legal Services Commission with a legitimate request for information that
was in the public interest, but she did not say that she worked for either
the LSC or for Leigh Day & Co. She did, however, say she was working with
Leigh Day & Co, a fact confirmed by them on 9th February 2009 when Jamie
Beagent wrote to her saying: "Your role and involvement. .in the legal
proceedings is perfectly proper".

The failure to redact this erroneous information before the Court was
entirely the fault of the lawyers involved and was not due to Margaret
Williams or any other advisors to the Claimants.

Erroneous information has now entered the public domain and subsequently
been used to mount misconceived and unjustified attacks on Margaret
Williams' privacy and character. Those making these attacks are ignorant of
all the facts of the case and are acting maliciously.

The alleged misrepresentation of quotations from NICE's witness Professor
Anthony Pinching as set out in Beagent's first witness statement (which
attracted criticism from the Judge) lies with Beagent, not with Margaret
Williams. Beagent chose not to heed the detailed quotations sent to him by
Margaret Williams and made critical errors in his first witness statement of
8th December 2008. This was entirely Beagent's own fault.

To the profound concern of the Claimants and all their advisors, the
Claimants' lawyers decided to ignore the 19 witness statements submitted at
the last minute by NICE and the witness statement and exhibits of Stephen
Hocking. The Claimants and their advisors urged their lawyers that it was
imperative to address the issues they contained but their barrister, Jeremy
Hyam, advised against doing so.

At the 11th hour, NICE issued very serious threats against both Jamie
Beagent and Jeremy Hyam to the extent that, on the first day of the hearing
and, without any discussion whatsoever with the Claimants or their advisors,
they decided to withdraw a large portion of the Claimants' evidence against
NICE and to apologise to the Court and to NICE. The Claimants and their
advisors believe this decision cost them the case which then had no hope of
succeeding.

As a consequence, in April 2009 a substantial complaint was served upon both
Jamie Beagent and Jeremy Hyam, which is currently before the Legal
Complaints Service and the Bar Council Standards Board and is the subject of
on-going action.

29th July 2009

Swine Flu Questions and Answers

2009-07-28T17:53:00.002+01:00

MAY BE REPOSTED

Version 3 of the latest updated information on swine flu in a Question and
Answer format can be found on the home page of the MEA website:

http://www.meassoci ation.org. uk >> quick links section on the home page

Swine flu and ME/CFS - latest advice (27 July) from the ME Association

SWINE FLU AND ME/CFS: QUESTIONS AND ANSWERS (Version 3)

The ME Association continues to receive a wide variety of questions about
swine flu (influenza A virus H1N1) and how the pandemic might affect people
with ME/CFS.

The numbers affected in the UK are now rising quite rapidly - the current
official figure is around 100,000 cases - but the true total figure is
almost certainly much higher.

The most common age group to be affected is children under the age of 14.
Figures are much lower in the over 65s - suggesting a degree of resistance
here.

The situation regarding management is constantly changing - so this is our
current advice and information on the most common questions we are
receiving.

We will be updating this website posting at regular intervals to take
account of the latest official medical advice from the Dept of Health, as
well as feedback received from people with ME/CFS.

1 Are people with ME/CFS more at risk of catching swine flu?

Overall, the answer is probably no. However, if you belong to a sub-group
who easily pick up infections, especially coughs, colds and flu-like
infections, then the risk of catching swine flu may well be slightly higher
than for normal healthy people.

2 Can children and adolescents catch swine flu?

Yes, and the symptom pattern appears to be similar to that seen in adults
(see question 8). There are now some serious cases involving children -
whose immune systems obviously have no natural resistance to this infection.
Consequently, the use of antiviral medication (ieTamiflu) will also need to
be considered in this age group. Infected children should obviously remain
off school/college but the Dept of Health is not normally recommending the
closure of schools where cases exist. However, some experts are now
questioning whether schools and colleges, especially in high risk areas,
should remain closed after the summer holidays - as they are an important
route of transmission in this age group.

3 How can I avoid catching swine flu?

In very simple terms, the more people you come in contact with the higher
the risk - especially people who are coughing or sneezing. The highly
contagious time for people who have the virus is around the time when they
have first have symptoms. So try to keep away from crowded public areas and
public transport, including aeroplanes - if it's not really necessary. This
is particularly important if you have an 'at risk' condition (see point 7)
as well. Simple avoidance measures and hand washing will help to reduce the
risk but you cannot eliminate risk completely. Coughing and sneezing also
spreads viral droplets onto hard surfaces such as door handles, keyboards
and phones - where they can remain infective for up to 24 hours. This is
another important form of transmission. Wearing a cheap face mask isn't
thought to be a very effective form of protection!

People in high risk groups (see point 7), especially those with
respiratory/ lung disease, must make sure that their symptoms are under good
control, and that any chest infection is promptly treated. And stop smoking
if you do!

4 How can I build up my resistance to catching swine flu?

The media is full of advice from 'health experts' about how to 'boost your
immune system' using vitamin C, Echinacea and all kinds of expensive
supplements. However, there is no sound scientific evidence to show that
these products make any real difference.

5 How dangerous is swine flu?

At present, the virus appears to be of similar virulence to any other type
of flu virus - but it may be causing more severe respiratory symptoms in
some people. So the vast majority of people are experiencing a relatively
mild illness. If the virus starts to mutate (ie swap or change its genetic
make up) and different strains emerge then the situation could become more
serious quite quickly. As with any other flu like virus, there are going to
be occasional cases where perfectly healthy people develop severe
complications (such as pneumonia). People with 'at risk illnesses' - such as
asthma or cancer - are more likely to develop potentially serious
complications. This is the reality of any infectious disease.

6 Are people with ME/CFS more at risk of developing complications from
swine flu?

Overall, there is no evidence to indicate that people with ME/CFS are more
at risk from developing the serious complications that can occasionally
occur with swine flu. However, those who are more severely affected,
especially anyone who is bed-bound or prone to chest infections, may be more
at risk from respiratory complications. And as many people with ME/CFS
experience a relapse or exacerbation in symptoms whenever they catch a viral
infection, an episode of swine flu is highly likely to make ME/CFS worse.

7 Does it make any difference if you have other medical conditions?

Yes, it can make a significant difference. Because swine flu is an
infection that predominantly affects the respiratory tract/lungs, those with
any form of respiratory disease - asthma, chronic bronchitis and
COPD/chronic obstructive pulmonary disease in particular - are more at risk
from developing potentially serious respiratory complications. So if you
already have a chronic lung disease, it's important to make sure that you
are controlling symptoms with medication as well as possible.

Other illnesses and situations that increase the likelihood of serious
complications include:

* diabetes
* liver and kidney disease
* chronic neurological disease that affects respiratory function
* heart disease
* immune system deficiency caused by cancer, leukaemia, and drugs such
as steroids
* pregnancy, - especially during the third trimester - where the
immune system is naturally suppressed
* young children under 5
* the over 65s - although people over the age of 60 may have some
partial immunity to the virus

Although a variety of immune system abnormalities can occur in ME/CFS, these
are not usually consistent with the sort of immune system deficiency that
makes people much more susceptible to this type of infection.

8 What are the main symptoms of swine flu?

At present, swine flu tends to present with an acute onset with some or all
of these typical flu like symptoms:

* a sudden onset of fever - 38 degrees centigrade or over (but not
always present)
* cough (can be dry) or shortness of breath
* headache
* sore throat
* sneezing and/or runny nose
* aching muscles
* loss of appetite
* diarrhoea

But this picture may change if the virus mutates and new strains emerge.

You can do a very helpful symptom check on www.nhs.uk <http://www.nhs. uk/> .

9 How can you tell the difference between ME/CFS flu-like symptoms and
swine flu?

This may not always be easy as some of the symptoms clearly overlap. But
swine flu should always be considered where there is a new or sudden onset
of flu-like symptoms - especially if this includes sneezing and cold-like
symptoms, respiratory symptoms or a cough, and a definite fever. The key
advice here is to trust your instinct - if something different with flu-like
symptoms is clearly happening seek medical advice.

It's worth noting that a variety of plant pollens can cause sneezing,
coughing and other hay fever type symptoms at this time of year - which may
add to the confusion over diagnosis.

10 Can swine flu trigger ME/CFS in previously healthy people?

As infections are a very common trigger for ME/CFS, and we know that
ordinary flu can trigger ME/CFS, the answer is almost certainly yes. The
MEA contributed to a very helpful article in The Guardian on this issue::

http://www.guardian .co.uk/world/ 2009/jul/ 21/swine- flu-recovery- tips

11 What should I do if I have new flu-like symptoms that do not seem like
ME/CFS?

For the vast majority of people an episode of swine flu will not be that all
that different from any other type of flu. This can be normally treated at
home with rest, plenty of fluids and painkillers (paracetamol or ibuprofen).
Swine flu symptoms tend to last for no more than a week.

THE NATIONAL PANDEMIC FLU SERVICE

The Department of Health has now set up a specific National Pandemic Flu
Service telephone helpline and website to give diagnostic advice and take
some of the pressure off GPs.

Telephone helpline: 0800 1 513 100 (treatment) and 0800 1 513 513
(information) .

Please note that this service is not manned by health professionals - a
decision on whether to issue Tamiflu will be made on your answers to a check
list of symptoms. If you are not happy with the advice being given you
should speak to your GP.

NPFS website: www.direct.gov. uk/pandemicflu

You can also obtain information by:

* calling your GP - who should be able to give a diagnosis over the
phone rather than you visiting the surgery. This is because visits to a
surgery by people with the infection will help to spread the infection to
vulnerable people in the waiting rooms who have illnesses such as cancer
* calling NHS Direct on 0845 4647 (England)
* calling NHS 24 on 08454 24 24 24 (Scotland)
* calling NHS Direct Wales on 0845 4647
* calling 0800 0514 142 (in Northern Ireland)

If symptoms are serious (ie breathing difficulties; drowsiness) or
deteriorating, and you are unable to obtain advice from the above, you
should phone the accident and emergency department at your local hospital.

12 What are Tamiflu and Relenza?

Tamiflu (oseltamivir) is an effective antiviral drug that works by reducing
the replication of the virus. Tamiflu will :

* relieve symptoms
* slightly shorten the duration of symptoms and infectivity
* reduce the chances of serious complications such as pneumonia

If you have an illness such as asthma that puts you at increased risk of
developing complications from swine flu it's important to start taking
Tamiflu as soon as possible. To be effective the drug really needs to be
used within 48 hours of the onset of symptoms. Antiviral drugs are being
given out by doctors in relation to individual clinical circumstances - they
are not necessary in every case. And they are not normally being given as a
prophylactic/ preventative measure to contacts of cases - unless there are
special circumstances.

Tamiflu side-effects can include nausea, which appears to be the most
common. Nausea can be reduced by taking the drug with or immediately after
food, and drinking some water. Other possible side-effects include
vomiting, abdominal pain, dyspepsia, diarrhoea, headache, fatigue, insomnia,
dizziness, conjunctivitis, epistaxis (nose bleed) and a rash. Very rare but
more serious side-effects include hepatitis, Stevens-Johnson syndrome, toxic
epidermal necrolysis and neurospychiatric disorders. The drug should not be
taken by people with kidney disease and not normally during pregnancy (where
safety remains uncertain). It can be given to children. A liquid
preparation is available for children and people who cannot take tablets...

Relenza (zanamivir) is another antiviral drug. This drug is inhaled and is
suitable for use in pregnancy. However, it can cause bronchospasm (airways
spasm), urticaria and skin rashes. It needs to be used with caution in
anyone with asthma and lung disease.

13 Should people with ME/CFS take Tamiflu?

The simple answer at present is probably yes - but this is clearly a
decision that has to be made in relation to individual circumstances.
Tamiflu appears to be a generally safe and effective treatment with a low
level of side-effects. So Tamiflu is a drug that should be seriously
considered when a person with ME/CFS develops swine flu, or has symptoms
suggestive of swine flu - the main reason for use being that the swine flu
infection could well cause an exacerbation of ME/CFS.

14 How do I get Tamiflu?

Your GP can issue a prescription.

Or you obtain a diagnosis from the National Pandemic Flu Service - a member
of staff will issue you with a reference number. This is then taken -
preferably by someone who is healthy - to a pharmacy, or other collection
centre, where the drug will be dispensed.

15 When will a swine flu vaccine be available?

Now that the genetic make-up of the virus has been identified, scientists
are rapidly developing a vaccine that will be based on a killed virus. The
latest information we have is that this new vaccine may be available from
September or October onwards once it is licensed for use - probably without
all the normal very strict pre-marketing checks for safety. Once the
vaccine is ready for use (two doses will be required), and we know more
about it, we will issue further information in relation to its use in
people with ME/CFS. This will take account of the fact that ordinary flu
vaccine can sometimes cause an exacerbation or relapse of ME/CFS symptoms.
At the start of mass vaccination, top priority will obviously be given to
people with 'at risk' health conditions.

16 What is the situation regarding foreign travel?

If you are planning to travel abroad, check with the Foreign and
Commonwealth Office travel advice at: www.fco.gov. uk/travel or call 0845 850
2829. Do not travel abroad if you have symptoms suggestive of swine flu.

Make sure your travel insurance is up to date and you have an up to date
European Health Insurance Card (this used to be an E111) - which can be
obtained through an on-line application and should be back within a week.
This card will entitle you to the same standard of state health care that
you would normally receive under the NHS in the UK. If you cancel a trip
due to having swine flu, you should be covered by your travel insurance
policy - although some policies do have an exclusion clause relating to
pandemics. If you cancel because you are worried about swine flu, it's
unlikely that you will be covered for any financial losses.

It's worth noting that the UK is regarded as a high risk zone for swine flu
and some countries have now introduced thermal scanning at airports. This
could mean that people travelling with a fever or other flu like symptoms
will find themselves being refused, or quarantined on arrival. Some airlines
are now banning people with swine flu symptoms from travelling.

Most European countries have health facilities that are up to date with
swine flu management and Tamiflu may/should be available - if required. But
you do need to consider what would happen if you intending to travel to a
country with sub standard health facilities. Your GP may be willing to
prescribe Tamiflu on a 'just in case' basis if you want to take some with
you. And if you already have any lung problems, it's worth asking your GP
if he will prescribe a broad spectrum antibiotic such as amoxycillin for use
abroad in case you develop a chest infection.

FEEDBACK FROM PEOPLE WITH ME/CFS WHO HAVE HAD SWINE FLU

Feedback so far is from four people with ME/CFS who have had swine flu. All
four have had several swine flu symptoms and three have been quite poorly
but without any serious complications. One has had a relatively mild
illness. They are all recovering slowly. Two have taken Tamiflu with
nausea being reported by both as a side effect.

PREPARING FOR SWINE FLU

The Dept of Health recommends that everyone should have a network of 'flu
friends' in place who could help out if you fall ill. This is obviously
going to be far more important if you live alone or are housebound.

YOUR FEEDBACK ON SWINE FLU

Please continue to let us know via ME Connect (
meconnect@meassocia tion.org. uk This email address is being protected from
spam bots, you need Javascript enabled to view it ) if you want to draw
anything to our attention about swine flu or have a query/comment that can
be added to the next MEA website update. In particular, we want to hear
from people who have had swine flu and/or taken Tamiflu.

We hope you find this information helpful and practical.

Dr Charles Shepherd

Hon Medical Adviser, The ME Association

27 July 2009

ENDS

Swine Flu Exposed

2009-07-21T15:07:00.001+01:00

PERMISSION TO REPOST

Scroll down the website to read much more news on
One Click or go to the News Archives
http://www.theonecl ickgroup. co.uk/news. php

SUMMARY

* ONE CLICK ON SWINE FLU
http://tinyurl. com/nwf3yf
LOGO
Why The Dangerous And Useless Tamiflu Drug Is Being Peddled,
The Swine Flu Vaccine Exposed,
Common Sense Practical Medical Information On Swine Flu Published
Let's all get real about Swine Flu. The hysteria
generated by this illness is entirely contrived
and is the disgraceful recession proof get out card
of the pharmaceutical industry. One Click publishes
the evidence as to why the government is handing out
the useless and dangerous Tamiflu drug like sweeties
to the unsuspecting population. We further expose the
dangers of the Swine Flu vaccine and show how this
'pandemic' has been manipulated by the pharmaceutical
industry, the WHO and governments around the world
that are orchestrating this hysteria to serve their
own financial and political purposes. One Click
publishes medical information on Swine Flu from the
eminent Dr Sarah Myhill and comments: "Try to apply
common sense and get on with your lives, despite how
governments and the pharmaceutical industry are
attempting to wreck them. It is invariably how
governments mishandle `pandemics' through fear
marketing that causes the chaos, not the illness
itself."

Information Release, The One Click Group
Related Links:
* Legal Immunity For Swine Flu Vaccine Manufacturers - David Salisbury Questioned
Mike Stobbe, The Associated Press/The One Click Group
http://tinyurl. com/l5dkux
* US reviews risks of Tamiflu after 12 children die
Jeremy Laurance, The Independent
http://tinyurl. com/lrywua
* We all love Tamiflu
The Jobbing Doctor
http://tinyurl. com/lxxsny
* Swine flu vaccine to be cleared after five-day trial
Jon Ungoed-Thomas, Sunday Times
http://tinyurl. com/lzyjac
* Baxter Files Swine Flu Vaccine Patent A Year Ahead Of Outbreak
Lara, Health Advocate
http://tinyurl. com/lugoca
* Baxter - Live Bird Flu Virus Shipped To 18 Countries As Vaccine
The Right Perspective - New York City
http://tinyurl. com/bfyduc
* The Art Of Endeavoring To Swine Flu Deceive
A. True Ott, PhD, ND, Vaccine Injury Coalition
http://tinyurl. com/nsybuc
* SWINE FLU
Patient Information
Dr Sarah Myhill
http://tinyurl. com/mvbyae

* UK Care Chief Suspended As Social Workers Continue To Pose Risk To The Public
http://tinyurl. com/mf2td8
PHOTO
Health Secretary Andy Burnham has ordered a review
of the regulator
Social care chief Mike Wardle has been suspended
over a complaints backlog that meant social workers
continued to practise despite being a potential public
risk. The health secretary said General Social Care
Council head had been replaced while the "matter of
extreme concern" was investigated. Of a backlog of
203 complaints against social workers, more than 20
involved claims suggesting risk to the public. Liberal
Democrat health spokesman Norman Lamb said the situation
was an embarrassment for the government and "another
example of a poorly-run quango".

BBC NEWS
Related Links:
* The Consensus Report
Family Law Reform
http://tinyurl. com/eaxml
* Social Worker Struck Off After Child Sex Offences
Editorial, Lynn News
http://tinyurl. com/ksl4wg
* UK NHS Database - Open Season For Paedophiles, Estranged Spouses, Social Workers Et Al
Dave Blackhurst, The Sentinel
http://tinyurl. com/n8z3aw

* The Terrifying World Of Vaccine Adjuvants
http://tinyurl. com/lu6ch3
PHOTO
For decades, vaccine developers have been tinkering
with various substances to trick the body into heightened
immune responses. Adjuvants can break "tolerance", meaning
they can disable the immune system to the degree that
it loses its ability to distinguish what is "self" from
what is foreign. An oil based adjuvant, squalene has
been known for decades to cause severe autoimmune
diseases in laboratory animals. The concept of
stimulating a hyperactive immune response by using
oil-based adjuvants has clearly backfired since we now
know that the stronger the antigenic response, the more
damaging the adjuvant itself is to the normal functioning
of the brain and nervous system. The precedent for mass
medical experimentation via an ever increasing recommended
vaccine schedule has been set. We can now predict the grim
future of mankind: an epidemic of neurological disorders
and autoimmune diseases never before imagined.

Edda West, VRAN - Vaccination Risk Awareness Network
Related Links:
* Legal Immunity For Swine Flu Vaccine Manufacturers - David Salisbury Questioned
Mike Stobbe, The Associated Press/The One Click Group
http://tinyurl. com/l5dkux
* The Art Of Endeavoring To Swine Flu Deceive
A. True Ott, PhD, ND, Vaccine Injury Coalition
http://tinyurl. com/nsybuc

END SUMMARY

HEB: Pressure Mounting on FDA to Approve Ampligen for Chronic Fatigue

2009-07-16T14:08:00.001+01:00

Today AP reported that Andy Burnham, the British Health Minister, said the UK could have up to 100,000 new cases of swine flu per day by the end of August. Currently we have seen only about 100,000 reported cases worldwide. If the cries of Andy Burnham are anywhere close to accurate, the world may be in for a huge health crisis.

read more...

Claudia Hammond examines Cognitive Behavioural Therapy on BBC Radio 4

2009-07-16T13:34:00.002+01:00

From Stephen Ralph of MENK-UK

http://www.bbc. co.uk/iplayer/ episode/b00lk03y /All_in_the_ Mind_14_07_ 2009/

Claudia Hammond examines Cognitive Behavioural Therapy to find out if it is,
as some people think, the easy option in helping them come to terms with
mental illness.

It is the biggest investment in talking therapies that there has ever been:
300 million pounds over three years on training an army of more than 3,000
therapists in Cognitive Behavioural Therapy, or CBT. The first trainees are
just about to graduate. But the programme asks, with the help of BBC Radio 4
listeners, if it is a scheme which will make a real difference or is it just
a quick fix?

CBT has been branded a panacea for treating mental illness. Some people
think it would be easier to have a course of this than to delve into their
past and address their relationships with their parents. Yet is a course of
CBT that easy? In reality, it examines behavioural patterns and sees how
they can be changed in order to deal with situations better. But change is
sometimes hard to come to terms with, so CBT might not be the easy option.

Claudia Hammond finds out what a course of CBT would entail, and meets the
blogger Fighting Monster, who talks about her work as a social worker for
the over-65s.

Broadcast on:

BBC Radio 4, 4:30pm Wednesday 15th July 2009

Duration:

30 minutes

Available until:

12:00am Thursday 1st January 2099

Categories:

. Factual <http://www.bbc. co.uk/iplayer/ categories/ factual> ,

. Health
<http://www.bbc. co.uk/iplayer/ categories/ factual/health_ and_wellbeing> &
Wellbeing

Go <http://www.bbc. co.uk/programmes /b006qxx9/ microsite> to All in the Mind
site

Vaccine Damage Compensation

2009-07-10T13:03:00.008+01:00

Something that may be of interest to you. I had no idea that chronic fatigue syndrome had been reported under the yellow card system as an adverse reactions to hepatitis B vaccines. This just proves that to be able to fully understand this illness and of course M.E. one must read as widely as one can.

Westminster Hall debates, 8 July 2009, 4:00 pm

Ian Stewart (Eccles, Labour): Today's debate focuses on adults such as those in the medical professions. 1993 DOH guidance required, as a condition of service, that all new employers in "exposure prone procedures" should receive hepatitis vaccines. However, people in other jobs are affected too, and I have listed them in my recent early-day motion 1646, which has attracted 138 signatories from all parties represented in the House. I repeat that the numbers affected are small, but, as with all vaccine victims, the casualties are completely innocent; their lives, and those of their families, have been sadly diminished through no fault of their own. This is a family issue.

News From One Click

2009-07-08T13:02:00.001+01:00

PERMISSION TO REPOST

Scroll down the website to read much more news on
One Click or go to the News Archives
http://www.theonecl ickgroup. co.uk/news. php

SUMMARY

* MMR Vaccine Puts 3,000 British Babies At Risk
Of Autism Or Death Each Year
http://tinyurl. com/ln47km
PHOTO
More than 3,000 British babies could be at
risk of autism each year
Fresh fears for the safety of MMR vaccinations will
be raised this week with a claim that more than 3,000
British babies could be at risk of autism and even death
each year. In a new edition of his book, The Truth About
Vaccines, Dr Richard Halvorsen, collates the latest
studies that suggest children with the condition have
developed autism after jabs. "If we could find susceptible
children we could prevent them from being damaged by
vaccines. At the moment we don't know how many children
are at risk. . . It seems to me the establishment are
just scared to utter any breath that vaccines can be a
problem," he said. The condition, mitochondrial dysfunction, describes the failure of parts of the victim's cells
which produce energy. A recent Newcastle University
study found at least one in 200 people harbours a
mitochondrial mutation. Last year, the US government
agreed compensation for 10-year-old Hannah Poling,
having conceded out of court that her autism was
linked to a series of jabs in July 2000 at 19 months.

Lucy Johnston, Express Newspapers
Related Links:
* The BMJ, Vaccines Propaganda, Professor David Salisbury
And Trimedia Public Relations
The One Click Group
http://tinyurl. com/ldwo8c

* Bioweapons, Dangerous Vaccines, and Threats of a Global Pandemic
http://tinyurl. com/nocjlu
LOGO
Although international law prohibits the use of chemical
and bacteriological weapons, America has had an active
biological warfare program since at least the 1940s.
World media are reporting that Baxter Pharmaceuticals
has admitted that it 'accidently' contaminated various
vaccine batches with Avian Flu viruses, shipped to 18
countries. Either stupidity and incompetence are to
blame or intentional contamination of flu vaccine lots
was at work. On June 10, Austrian journalist Jane
Burgermeister filed sweeping criminal charges with
the FBI in addition to earlier ones on April 8 with
the Vienna State Prosecutor's Office against Baxter
AG, Baxter International and Avir Green Hill Biotechnology
AG, "for manufacturing, disseminating, and releasing a
biological weapon of mass destruction on Austrian soil
between December 2008 and February 2009 with the intention
of causing a global bird flu pandemic virus and of
intending to profit from that same pandemic in an act
that violates laws on international organised crime
and genocide." On June 25, Daniel DeNoon in WebMD
Health News reported that CDC's influenza surveillance
chief, Dr. Lyn Finelli, said: "Right now, we are
estimating over 1 million Swine Flu cases in the US"
in 2009 affecting about 6% of households in major cities."
One Click Note: The New England Journal of Medicine
has published that the swine flu pandemic is a laboratory
'accident' (http://tinyurl. com/l9repe).

Stephen Lendman, thepeoplesvoice

* Venue Confirmation - UK ME/NHS Services Inquiry, 9 July 2009
http://tinyurl. com/lo4oea
LOGO
Some of those invited to attend the evidence session on
Thursday 9 July were informed that the venue for Thursday's
session is House of Commons Committee Room 18. It has been
confirmed that: the venue for the Thursday 9 July meeting
has been booked for Committee Room 8 and the venue for
the Thursday 16 July meeting has been booked for Committee
Room 18 which accords with the latest notice posted on the
APPG on ME website which I have appended. No Agenda has
been made available for this meeting, so I cannot list
the names of individuals and patient organisations who
have been invited to give evidence, other than Action
for M.E. and the ME Association, which I am told are
being represented by Sir Peter Spencer and Dr Charles
Shepherd, respectively. All enquiries in relation to
oral evidence sessions and inquiry in general to
Dr Des Turner MP. Contact details published.

Suzy Chapman, MEagenda
Related Links:
* UK Politician Snout Troughers In the ME/NHS Services 'Inquiry'
The One Click Group
http://tinyurl. com/kudmrc

* The ME/CFS H2S Urine Test
http://tinyurl. com/nfgm8d
PHOTO
Jan van Roijen publishes in his Help Me Circle
e-newsletter: "Last week I did the self-diagnosing
urine test for ME (Prof De Meirleir & Dr Roelant),
which I ordered from PROTEA biopharma. The Neurotoxic
Metabolite Test aims at detecting the presence of
abnormal metabolites in the urine. These metabolites
are related to the production of hydrogen sulfide (H2S).
Although H2S is naturally present in the body, and plays
some normal physiological functions, an excess production
can be very detrimental. The test has not yet been
approved as clinical diagnostic test, and should be
considered as 'research use only'." One Click Note:
On One Click we are not endorsing this test, merely
forwarding the promotion posted by Jan van Roijen and
his Help Me Circle that is in the public domain. There
has already been controversy over this test for ME/CFS
produced by Kenny De Meirleir. Some severe ME sufferers
have ordered two of these kits, one to do on themselves
and another on a healthy control not in the same
environment. The court of public opinion is as yet out
on this test whilst money is going to PROTEA Biopharma.
Flag your results up on the net, either named or
anonymously. It seems fitting that the consumer should
be the ultimate peer reviewer when money is likely to
change hands on this scale.

Jan van Roijen, Help Me Circle

The One Click Group

Mother Admits Helping Daughter's Suicide

2009-07-03T15:50:00.004+01:00

Mother admits helping daughter's suicide - but denies attempted murder

THE ARGUS 11:15am Friday 3rd July 2009

Sussex mother Kay Gilderdale admitted aiding and abetting the suicide of her seriously-ill daughter when she appeared in court today.

Bridget Kathleen Gilderdale, 54, known as Kay, was arrested at her home in Stonegate, near Heathfield, East Sussex, following the death of her daughter Lynn, 31, who suffered from ME, on December 4 last year.

Government's Responose to ePetition

2009-07-01T15:18:00.002+01:00

Wednesday 1 July 2009

AttendIiME2009 - epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to petition for Ministers Of Health, MRC and CMO to attend the INVEST in MEConference 29th May 2009.”

Details of Petition:

“We the undersigned petition the Prime to send the Minister Of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London. The previous IiME conferences in 2008 attended by presenters and delegates from 13 countries, from Europe, USA, Australia, New Zealand and South Korea demonstrated that “PROVEN BIOLOGICALMARKERS & TREATMENTS FOR SOME SUB TYPES OF ME/CFS ARE ALREADY THERE!” Now the challenge is for the Chief Medical officer, the Medical Research Council and the Government to take up the challenge laid down by the conference in 2008 and commit to a national strategy of biomedical research into ME, without any conditionsor provisions for enforcing the psychosocial model to be in corporated.”

· Read the petition
· Petitions homepage

Read the Government’s response

Thank you for your e-petition. I apologise for the delay in replying. Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events. Regrettably, it is not possible to attend the vast majority of these events.

The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.

More generally, the Government recognises chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) as a debilitating and distressing condition. CFS/ME is a chronic illness and health and social care professionals should manage it as such.

The Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities. The Department’s research budget for 2009/10 is £896million. Details of individual NHS-based projects, including some concerned with CFS/ME, are on the UK Clinical Research Network Portfolio database at www.nihr.ac.uk. Some of these projects receive external funding from research councils and charities.

There have been some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition. Clearly, these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.

Bulletin of the IACFS/ME

2009-07-01T15:01:00.002+01:00

Volume 17, Issue 2 • 2009

Sky News Report on M.E.

2009-06-21T11:34:00.003+01:00

From Dr Charles Shepherd

In addition to the two video clips already noted on the MEA website:
http://www.meassoci ation.org. uk/content/ view/890/ 70/ a further item has now been posted:

http://www.youtube. com/watch? v=42nSNLQsVNs

NB: The comment facility to this video clip has been disabled.

What Helps You?

2009-06-19T11:51:00.010+01:00

Although I haven't tried many supplements and medications, the ones I have tried have helped me in some small way. Not necessarily curing but mostly managing the various symptoms. As we all know there are a myriad of symptoms and by my count it would be necessary to take over 60 different supplements if each were to deal with an individual symptom. Clearly, this is unsustainable and is likely to be as good for our bodies as it is for our pockets.

Perhaps if we share our knowledge we might reach a consensus on the best supplements/medications for our condition.

What supplements or medications have made a positive difference to your condition and how?

Please pop over to the discussion forum and share your thoughts.

9,200 Deadly Germs/Toxins Vials Unaccounted For By Army Biodefense Lab

2009-06-18T18:55:00.002+01:00

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

SUMMARY

1. 9,200 Deadly Germs/Toxins Vials Unaccounted For By Army Biodefense Lab

An inventory of deadly germs and toxins at an Army biodefense lab in Frederick found more than 9,200 vials of material that was unaccounted for in laboratory records, Fort Detrick officials said Wednesday. Col. Mark Kortepeter, deputy commander of the U.S. Army Medical Research Institute of Infectious Diseases said the found material included Korean War-era serum samples from patients with Korean hemorrhagic fever, a disease still of interest to researchers pursuing a vaccine. Other vials contained viruses and microbes responsible for Ebola, plague, anthrax, botulism and host of other ailments. He said Army criminal investigators have concluded that three vials of Venezuelan equine encephalitis that were discovered missing last year "were likely used up but for some reason were never recorded with the database."
David Dishneau, Associated Press
Related Links:
* Baxter - Live Bird Flu Virus Shipped To 18 Countries As Vaccine
The Right Perspective - New York City

2. Teenage Girls Develop Degenerative Muscle Diseases After HPV Vaccine Injections

The FDA and the Centers for Disease Control and Prevention (CDC) have launched an investigation into a potential connection between the Gardasil vaccine for the human papillomavirus (HPV) and a rare degenerative muscle disease. Concern over a connection between Gardasil and the rare disease -- known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease -- was first raised by Phil Tetlock and Barbara Mellers on their blog. Shortly after receiving the Gardasil vaccine two years ago, their daughter Jenny began to lose motor strength and control, eventually becoming completely paralyzed before dying on March 15.
David Gutierrez, Natural News.com

3. Selected UK MPs Launch Workers' Vaccine Damage Early Day Motion

That this House notes with concern the serious adverse reactions that some adults have suffered following receipt of the hepatitis B and other vaccines, which they were required to have as a condition of their employment; acknowledges that in the United States 146 hepatitis cases have been fully compensated out of 578 applicants; and calls on the Government to include all occupational vaccines on the approved list under the Vaccine Damage Payment Act 1979, to provide for vaccine damage under the Industrial Injuries Scheme or establish a new scheme covering occupational vaccines for adults which includes all single and multiple vaccines and their component parts, and for the chosen scheme to protect all workers including those in training.
Ian Stewart MP et al, Early Day Motion, UK Parliament

END SUMMARY

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

Psychotherapy Debate on BBC Radio 4

2009-06-17T12:53:00.003+01:00

http://www.meaction uk.org.uk/ BBC_Radio_ 4_-_CBT_Debate_ -_LoFi_170609. mp3

or

Visit the Today Programme website.

http://news. bbc.co.uk/ today/hi/ default.stm

The debate on CBT can be heard if you forward to 2hrs 52

The programme is 3 hours long.

M.E. and Sky News

2009-06-13T12:34:00.004+01:00

For reposting..

From Dr Charles Shepherd

The ME Association has been working with Sky TV news this week, who will be covering the subject of biomedical research into ME/CFS, the role of the MRC, and the gene expression studies.

This item is designed is to link in with the European scientific meeting taking place in Norway on Saturday 13 June.

We do not, at present, have details for times of this coverage but the item is likely to be included in news bulletins from mid morning onwards.

Further information will follow.

http://www.meassoci ation.org. uk/content/ view/888/ 161/

M.E. Funding - Where Exactly Is The Money Going?

2009-06-12T13:51:00.009+01:00

Permission to Repost

Campaigning for Research into ME (RiME)

Sussex Services

Sussex wide CFS/ME MDT service http://rwstgp. org.uk/site/ cfs.html

Referral criteria

Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

• Aged 16 or above, but no upper age limit
• Under 16s should be referred to Acute or Community Paediatrics or CAMHS
• A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.
• No clear alternative medical or psychiatric diagnosis has been made
• The duration is at least 4 months
• There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months
• The patient is willing to have a biopsychosocial and management assessment
• The GP or referring doctor is responsible for providing reports for benefits/employment /insurance purposes as appropriate, which will not be provided by LMDT staff.

Notes on Medical Screening

Assessment

All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicated
N.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.
Medical assessment will include :

History

Particular emphasis should be placed on:

History of present complaint
Any atypical features suggesting alternative diagnoses
Current activity level/pattern
Mood disorders (including both depressive and anxiety disorders)
Illness beliefs
Sleep pattern
Common medical and psychiatric exclusions

Examination

All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.

All patients will undergo a mental state examination.

Investigations

Prior to Referral - all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.
(NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.) The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.

The multi-disciplinary team will be based at

Chronic Fatigue Syndrome Service
Sidney West Primary Care Centre
Leylands Road
Burgess Hill
West Sussex RH15 8HS
Tel: 01444 238870
Fax: 01444 238889

Referral Proforma

April 4, 2009
____________ _________ _________ _________ _________ _________ _
Link to Barts
The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:
.... The Sussex MTD will be linked to Barts' who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi-Disciplinary Team, in order to enable patients to receive their care locally. The Barts' CNCC will also offer one-off consultation on more complex cases where this is appropriate. ...

Ed. the Barts CNCC has been condemend by ME patients in London (see www.rime.me. uk - Clinics, London file).
____________ _________ _________ _________ _________ _________ _
Selected Comments

Brighton 2008
.... The rationale for the Sussex CFS Services seems confused – they are supposed to be specialised ME services, but fatigue is the only symptom listed in the referral criteria. The hallmark signs and symptoms of Myalgic Encephalomyelitis, which include Immune, Neuro and neuro cognitive and neuro endocrine in addition to PEM (Post Exertional Malaise), are missing from the Sussex CFS referral, assessment, and treatment criteria. So the Services don't seem to be about ME.

The crux of the problem is that the Sussex referral criteria select patients with fatigue, and GPs see a lot of patients with fatigue from numerous different causes; most of the causes are not ME...

We should definitely now be using the Canadian Criteria to identify ICD G93.3 ME. To think of all the wasted years and wasted £millions since the CMO’s working group was convened in 1998, and we have been landed with CBT/GET, which has been discredited in so many ways, and has no scientific basis...

Why was the first Clinical Lead of the Sussex CFS Services a doctor described as a ‘specialist in psychological medicine’ and a ‘specialist in corporate CBT Training’, who describes ME as "medically unexplained" ? Then the CFS Services Leads were doctors whose background is General Practice...

I wish the £11 million earmarked for ME had been spent on relevant biomedical research....

Brighton 2009
.... The Sussex ME/CFS Society did not win my heart and mind in the years I was a member. I left after a few years in sheer frustration as the officials did not seem to be speaking about the disease I live with - yet they assured me that they were representing people with ME; they then went ahead and accepted CBT/GET ‘management’ for local NHS services. The actual ME patients didn't have any say in the matter. It now turns out the Kent and Sussex ME/CFS Society is also involved in a pilot trial of the Lightning Process.... Lightning is an unproven NLP process that puts the onus on the patients by claiming that if the sick patients doesn't recover its because they didn't ''do the work''...

The Chronic Fatigue Society, also called reMEmber, say they were closely involved in the planning stage of the Sussex CFS CBT/GET services. reMEmber seem to put their resources into running self-management courses which they say are open to all people suffering from ‘chronic fatigue’....

I would like representation by a patient charity that is compatible with the multisystem organic seriousness of Canadian Definition ME. The referral criteria for the Sussex CFS Services relies too much on vague fatigue and does not mention the WHO ICD G93.3 classification of Myalgic Encephalomyelitis or the Canadian Definition of ME.... what do so called "illness beliefs" have to do with ME?....

Mid-Sussex 2009
I attended the Chronic Fatigue Unit when it was at the Princess Royal Hospital in Haywards Heath. High expectations fell to total disillusionment. The treatment didn't help me; based on CBT, I failed to understand how it related to my illness - Myalgic Encephalomyelitis (ME). Subsequently, I knew someone with ME who described the CF Unit as a sham. Effective treatment for sufferers of this dreadful, neurological illness, in my opinion, will only come through properly funded biomedical research which is clearly lacking in the United Kingdom at this time.

Seaford Letter in Sussex Argus 2007
.... Most people with ME in Sussex are.. not happy with the services on offer.. at the clinic Haywards Heath... They seem to offer only psychologically based interventions that have been shown to often cause people to become worse, not better. This is because the assumption made at clincs such as these is that ME is a psychological condition perpetuated by psychological factors. It is not. It is time funds were instead given to.. physically based research studies...AfME and the Sussex Group do not represent the great majority.. with ME in this country.

Eastbourne Letter to APPG Chair 2005
.... People I know with ME do not support the NHS 'CFS/ME' clinics which are currently being set up around the country and which offer psychiatric/ psychological models of treatment. Someone with ME who attended the Maidstone CBT clinic claims that they were subjected to a lecture by a psychologist who talked about issues such as low self-esteem, negative thoughts, abnormal illness beliefs... They didn't return. And I think these clinics will be generally boycotted by ME patients. People with other conditions, though, that would fit a loose CFS definition will probably attend and some of these might benefit > skewed results... the number of people with ME who subscribe to the Sussex/Kent Group would be a small minority... in both counties. Those I know with ME want nothing to do with this Group.

Continuing on the issue of fairness, you (APPG Chair) have invited Prof. Pinching to address the APPG next Tuesday re. the NHS Clinics. He will most probably tell the attendees that everything is going swimmingly well. Have you also invited a party or parties who will put the other side of the coin eg RiME, the 25% Group... or someone from a local Group who opposes the new 'CFS/ME' unit in their area eg the neighbouring Winchester + Eastleigh Group...

Haywards Heath 2006
It is v important that money allocated to... ME be used to diagnose the physical causes of this v serious illness. It is entirely evident that the present forms based on psychological causes/treatment is just not working.

The latest span of clinics are an off-shoot of the already well-established under the guidance of the 'global expert on ME' - Prof. SW... there is not a shred of evidence there has been any benefit whatever to these individuals. .. patients are known to be coming out of these clinics with a different name to their serious symptoms... My treatment as a nurse... instilled in us that patient needs come first. This clearly is not happening.. Not only are patients' needs not being met, these ill people are being brandished - bullied - intimidated in the most pernicious way, by the profession trained at the expense of the public purse...

Wadhurst 2005
... my daughter has been chronically affected with ME and bed-ridden for fourteen years now. These new clinics have nothing to offer people like her. We would much prefer that public money was spent on biomedical research into ME ...

2009
... having discussed the Clinics with ME friends in Brighton and Haywards Heath (who sent me the description of the Haywards Heath service), I certainly wouldn't attend such clinics. What has this got to do with G93.3 ME? That the Sussex/Kent Group is supporting the 'CFS/ME' services begs questions as to who that Group actually represents? The same question, it would seem, could be asked of the Chronic Fatigue Society based in Sussex, also known as reMember? x,y was a member of the CMO's Working Group and supported its 2002 Report. Their courses which last two-and-a-half hours, include 'drawing up action plans, setting goals, problem solving and decision making.... ' (x,y 2003). If the courses are 'tremendously successful', one wonders who attends, exactly? I have no faith in the APPG Inquiry Panel which will be assessing the clinics. If they go to providers such as the Sussex Clinics, I suspect the response will be skewed and misleading in that they are most probably attracting patients with a range of conditions, some of which might respond to psychiatric/ psychological models of treatment. And if they go to the Sussex/Kent Group, it would appear they will get a favorable response...
____________ _________ _________ _________ _________ _________ _
____________ _________
Leader of Sussex and Kent ME/CFS Society, InterAction Christmas 2008:
... we have noticed in our area.. that more people with ME/CFS these days are falling into the mild to moderate category and improving with the help of various approaches more quickly than previously. As more professionals are recognising the illness sooner and administering symptom control along with sensible management advice, less people seem likely to slip into the chronic more severe illness.

In areas such as ours where there are specialist NHS Services, people are being diagnosed sooner and more GPs giving good early advice... We are starting to see with ME/CFS... that it makes sense to intervene earlier rather than later to prevent chronicity and severity of illness. Whilst aware... that the situation is far from perfect, things are improving and it's great to see more of our members moving on and being able to take up active lives again.
____________ _________ _________ _________ _________ _________ _
___________

Ed. - Sussex could be a litmus test to see from whom exactly the Inquiry Panel takes evidence and to whom it listens. If it was to exclusively or largely consider evidence from the NHS Service Providers in Sussex and the Sussex and Kent ME/CFS Society, then it would lay itself open to accusations of bias and stacking the deck.

There would appear to be similar concerns in other areas.

Paul Davis rimexx@tiscali. co.uk www.rime.me. uk

CFS Patient Groups Cowed By The CDC?

2009-06-09T19:45:00.003+01:00

[Co-Cure] ACT: CFS Patient Groups Cowed By The CDC?

Permission to repost

The only sane and rational response to the evident
failure of the DHHS, CDC and NIH to respond with any sense of urgency to the
public health threat of the epidemic disease Myalgic Encephalomyelitis over the
last 25 years can be found by reading Hillary Johnson’s powerful and forthright
speech titled “The Why” which was presented at the Invest in M.E. London
Conference on May 28th 2009. That is how you address the systemic failure
to address a disease that has destroyed the lives of millions around the globe
– speaking up truthfully and fearlessly about the undeniable facts. I applaud
Hillary for telling it like it is!

I ask all “CFS” patient organizations to read this
speech again and explain why they have not addressed the incriminating facts in
their meek testimonies to the CFSAC. Why are they not exposing the elaborate
web of deceit that ignored the evidence for this epidemic disease, replaced it
with a phantom creation called CFS, branded it as an unexplained illness,
restricted research to the genetics of stress, and cast patients as defective,
inferior human beings? A modern day eugenics program has been revealed in the
words of Reeves himself, and you have little to say that would radically alter
this inhumane and unforgivable state of affairs?

I read your testimonies and see nothing but
suggestions for tweaking this indefensible program. Remove Reeves - but the CDC
will find a similar replacement; make available the CDC’s research data since
1984 - on its phantom creation CFS; request that it abandon its Empirical CFS
Definition - ignoring the preceding false definitions; collaborate with other
researchers and organizations - under the CDC’s self-proclaimed supremacy;
partner with the IACFS/ME - whose conferences still unashamedly promote
psychosocial research, or the CAA - who benefited financially in the branding
of CFS; all calling for more of the same research to nowhere.

Hillary asks if we are more comfortable being
labelled as mental patients, and from the evidence of these testimonies it
appears that our so-called charities would rather let the false “CFS” construct
become more entrenched while millions of dollars are wasted on damaging
psychosomatic theories and not on urgently needed biomedical research. Not one
patient group is standing up for the scientific facts that have overwhelmingly
demonstrated that M.E. is an infectious and inflammatory disease of the central
nervous system, that this was the disease the CDC redefined as “CFS”, that the
disease is being transmitted through us and the blood banks without warning to
the general public, and M.E. patients are dying because of institutionalized medical
ignorance and neglect.

Not one group is demanding a Congressional Inquiry
into the institutionalized denial of Myalgic Encephalomyelitis, demanding that
the DHHS, CDC and NIH recognise the infectious disease M.E., and for the
creation of a definition that addresses the neurological, immune, autonomic,
cardiac and mitochondrial dysfunction together with the known biomarkers of the
disease, or that the CDC renounce its CFS program and alert the public to this
pandemic, or pushing for politicians and human rights groups to urgently
address this evident public health crisis. Not one group will acknowledge that
M.E. is the crisis! What is the gain to these groups by cowing to the CDC’s
“CFS” and not standing up for M.E.?

These groups do not protest against the request forwarded to newly appointed CDC director, Dr. Thomas Friedan, that “CFS activities” be moved from the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch - to the National Center for Chronic Disease Prevention and Promotion, a serious downgrade of priority. Not one group is demanding that the NIH place M.E. at the National Institute for Neurological Disorders and Stroke with a formidable budget - they do not question the CDC’s “CFS” being housed at the Office of Research into Women’s Health, knowing that no neurologist or other specialist will ever hear of the infectious disease Myalgic Encephalomyelitis. Whose side are these groups on?

Sadly, if all these groups and individuals are
content to quietly ask the CDC to tweak its “CFS” program then another
generation will have to fight this battle all over again and those of us beaten
by this terrible disease will struggle to live out our final days of living
hell in misery.

Heroically, the renowned author of 'Osler’s Web' has
spoken publicly and fearlessly about what we now know were outbreaks of Myalgic
Encephalomyelitis and not some “new illness” that the CDC allegedly
“discovered”.

Why can’t all patient groups call for truth and justice
for M.E. sufferers with the same fearless voices?

Will anyone hear Hillary’s brave and timely call
for us to be more “radioactive”, before it really is too late?

John Anderson

Petition to Limit Promotion and Delivery of CBT

2009-06-07T16:32:00.002+01:00

Friday 5 June 2009

NHSCBT - epetition response

We received a petition asking:

“We the undersigned petition the Prime Minister to limit the promotion & delivery of Cognitive Behavioural Therapy [CBT] within the NHS according to available evidence.”

Details of Petition:

“Following economist Lord Layard’s promotion of CBT on economic grounds, the NHS has seen a boom in the funding made available for the exclusive employment and training of CBT therapists in the NHS. However, equal funding has NOT been made available for a diverse range of psychotherapies. CBT continues to be aggressively promoted on the grounds of ‘evidence’ of its alleged effectiveness in treating some forms of mental distress, thereby severely and unfairly biasing public perception of CBT as a cure-all when this is patently untrue. Published evidence exists that shows CBT to have no long-term benefit in treating common difficulties such as anxiety or psychosis. Further evidence also shows CBT to worsen symptoms in people who suffer from, for example, Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS). As CBT is promoted on the grounds of ‘evidence’ of its effectiveness with some patients, this petition calls for the cessation of the use and promotion of CBT in the NHS where there is either no ‘evidence’ of its effectiveness or where ‘evidence’ exists to show that CBT is ineffective or deleterious to a patient’s wellbeing or symptoms.”

· Read the petition
· Petitions homepage

Read the Government’s response

The Improving Access to Psychological Therapies (IAPT) programme began in 2006 and aims to help Primary Care Trusts (PCTs) implement National Institute for Health and Clinical Excellence (NICE) guidelines for treating depression and anxiety disorders. It also aims to make psychological therapies more readily available so that they can be more easily accessed by everyone who needs them.

Since October 2007, the Government has made a significant investment in the IAPT, with annual funding rising to £173 million in 2010/11, helping to train 3,600 extra therapists and treat 900,000 more people over three years.

Initially, IAPT has focused on Cognitive Behavioural Therapy (CBT) as a core element of the new service because it has the strongest evidence base for treating the full range of depression and anxiety disorders. CBT also has the greatest shortage of appropriately trained therapists. The Department of Health is addressing this shortage first but the programme will be extended to the other NICE-compliant treatments. Alan Johnson announced the Statement of Intent in November 2008, which confirmed the commitment to improving access to all NICE-approved psychological therapies, not just CBT. IAPT services will offer these other therapies, including guided self-help, counselling, computerised CBT, behavioural activation and exercise, as the programme rolls out.

The Government acknowledges that CBT may not be the solution to everyone’s problems. However, it is clear from the evidence that it provides an essential building block, from which can be developed the full range of evidence based interventions.

Keys to Abusive Behavior in Treatment of ME/CFS patients

2009-06-06T13:19:00.005+01:00

I trawl the net every day in an effort to find the best stories about M.E., this next one is a corker and a MUST READ. The article can be found on ME-CFS COMMUNITY.COM. I urge you to take a look at this talented writers' work. In this particular piece she equates the relationship between an abusive partner or parent to the mental health movement and the hidden abuse they inflict.

From Slightly Alive, unpublished book manuscript, Mary M. Schweitzer, Ph.D., ©2009

As I read back through the psychiatric studies used to back the therapies of CBT and GET, and also as I began to read the mammoth and brilliant piece of work just released by Malcolm Hooper:

The Mental Health Movement: Persecution of Patients?

I found myself thinking about the steps that an abusive spouse or parent takes to perpetrate the crime. People often ask victims of abuse, "Why didn't you report this the first time it happened?" The victim generally has no good answer, because he or she has been the unwitting subject of a psychological campaign by the abuser to prevent any disclosure of what is going on. Here are the main means by which abusers are able to continue their cruelty for years.

1. Isolate the victim
2. Tell the victim nobody will believe his/her story.
3. Threaten the victim with harm if he/she tries to tell the story anyway....read more

Mother Wants Answers As Baby Dies From Vaccine

2009-06-06T13:05:00.001+01:00

PERMISSION TO REPOST

Scroll down the website to read much more news on
One Click or go to the News Archives
http://www.theonecl ickgroup. co.uk/news. php

SUMMARY

* Psychatirists Flogging Antipsychotics Damage Children
http://tinyurl. com/p5r3ze
LOGO
Just as the FDA is convening an advisory committee
hearing (June 9-10) about whether to expand the marketing
license of antipsychotic drugs for children, Medscape
reports that compelling evidence from the early findings
of a study, Metabolic Effects of Antipsychotics in Children
that raise serious safety concerns about the use of
antipsychotics in children. A sobering earlier report
in the Los Angeles Times by Melissa Healy focused on
the scientific evidence against the increased use of
antipsychotic drugs. That it did not make waves is
testimony to the media's dependency on pharmaceutical
industry advertising revenues. "This is very worrisome;
frankly I have serious concerns about these drugs," says
Dr. Steven Nissen, who is chairman of the Cleveland
Clinic's cardiovascular medicine department and serves
as an ad hoc advisor for FDA panels.

Vera Hassner Sharav, AHRP/Melissa Healy, Los Angeles Times

* Mother Wants Answers As Baby Dies From Vaccine
http://tinyurl. com/klzfe4
PHOTO
DISTRAUGHT: Natalie James, mother of Cindy Apithy,
in a sombre mood at her Longdenville home
A two-month-old baby girl died in her mother's arms
yesterday morning, hours after having her first vaccination.
Baby Cindy Apithy was bleeding from the nose and mouth
when she died. Her parents insisted yesterday that the
child's death was caused by the vaccine, although the
autopsy stated that she was smothered. The baby developed
a fever soon after the vaccine. The child's 38-year-old
father, Abenigo Apithy, an electrical technician, intends
to seek legal advice.

Carolyn Kissoon and Krishna Maharaj, Trinidad & Tobago Express

* MMR Vaccination Scheme Bullies UK Parents
http://tinyurl. com/mg7ryj
LOGO
The latest scheme to bully parents into giving their
children the MMR vaccination is to bar kids from school
unless they have had the measles, mumps and rubella jab.
How grotesque is that? Parents who decline the MMR jab
are not thoughtless, stupid or uncaring. They are unconvinced.
Privately, some doctors admit that the MMR jab can probably
do harm to children with pre-existing conditions.

Tony Parsons, Daily Mirror

* Experts Launch Think Tank for Mystery Disease
http://tinyurl. com/l5phg8
LOGO
Ten leading scientists in Europe have formed a Think Tank
for ME and will hold their first meeting on the 13th of
June. They want to initiate an effective research effort
to find the secret behind the mystery disease that cripples
an increasing number of lives. Myalgic Encephalomyelitis,
often referred to as Chronic Fatigue Syndrome (CFS), is
a disease which affects at least one million individuals
in the US, and an even greater number in Europe. Despite
the large number of people affected, there is a lack of
serious large-scale research initiatives focused on the
disease. The number of patients is rapidly increasing but
healthcare personnel lack knowledge about existing
research and possible treatments.

Press Release, European Society For ME (ESME)

* New Labour's Golden Parachute Boy - Dr Ian Gibson MP
http://tinyurl. com/owv7ew
PHOTO
Dr Ian Gibson MP published censored details of his
expenses claims on his website in an attempted cover up
UPDATE! Friday, 5 June 2009. Pharmaceutical industry drugs
rep Dr Ian Gibson (Labour, Norwich North) has resigned
from Parliament today. Caught with trousering over £80,000
of taxpayers' money to help pay for his daughter's London
home before selling it to her for around half its market
value, it has now been announced that Dr Ian Gibson MP's
only punishment for having his trotters in the voters'
till is that he will not be allowed to stand for the
Labour Party at the next General Election. Prior to this
scandal breaking, this was Dr Gibson's intention anyway.
One Click exposes Dr Gibson's Money Tree in detail that
shows that thanks to the lax discipline of New Labour,
he is now set to enjoy a financial package fortune that
will make many suffering from one of the worst recessions
in British memory incredulous. This is the ultimate insult.
If the best discipline that the government can provide to
reassure the voters is to throw even more of our money all
over the likes of Dr Ian Gibson MP, our erstwhile 'democracy'
is finished. Contact details for Dr Gibson are published.

The One Click Group
Related Links:
* Fraudster Dr Ian Gibson MP Swindles £80,000 From British Taxpayer
The One Click Group/Daily Telegraph
http://tinyurl. com/qcjzr6
* Dr Ian Gibson MP Promotes Vaccine Cocktail For 11 Year-Old Girls
Norwich Evening News/Lara, Health Advocate
http://tinyurl. com/2dregs
* The One Click Group Report - The Gibson 'Inquiry'
The One Click Group
http://tinyurl. com/24wgag

END SUMMARY

Experts Launch Think Tank for Mystery Disease

2009-06-05T11:11:00.006+01:00

Permission to Repost

Experts Launch Think Tank for Mystery Disease

Ten leading scientists in Europe have formed a Think Tank for ME and will hold their first meeting on the 13th of June. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there is a lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.

Last year's winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, "Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes.” Montagnier, one of the discoverers of the HIV-virus, is a supporter of the Think Tank, but is unable to join the first meeting due to his demanding schedule.

Treatable Disease

Ten internationally recognized scientists, many of them prominent leaders in their respective fields of research, have decided to do something about it. They have come together in a Think Tank to promote cooperation among scientists from various disciplines and to stimulate intense focus on innovative and creative research. The first meeting is set in Stavanger, Norway on the 13th of June.

“There are more than 5000 research papers which show that ME has an organic basis with abnormalities in the immune, nervous and gastrointestinal systems and that it is influenced by genetic and environmental factors,” states Professor Kenny De Meirleir of Belgium. “Despite these findings, it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.”

Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be €20 billion annually.

Educate Professionals

An important part of the Think Tank’s mission is to spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients’ quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states, “There is a total lack of knowledge and understanding about this disease in the healthcare system. We wish to use our knowledge to educate and train doctors, therapists and other healthcare personnel so they can better understand how to manage an ME-patient.”

New in ME

The Think Tank meetings are the brainchild of a new organization, European Society for ME (ESME). This society will focus on organizing research and educating professionals in the field of ME.

“Until now ME organizations have been patient-based and only focused on the needs of the patients, so this is something completely new and unique. We are a group of professionals who want to stimulate new research in the field of ME and to help doctors and healthcare personnel to stay informed about the latest developments in diagnosing and treating ME-patients,” says ESME board member Mrs. Catherine Miller-Duhen.

Press Conference

The first Think Tank meeting will be held in Stavanger, Norway on the 13th of June. This will be immediately followed by a press conference where the specialists will be available for comments and interviews.

On Friday the 12th of June, a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients.

Press conference: Saturday 13th of June, 4 pm, Press room, Clarion Hotel Stavanger, Stavanger, Norway. To register for the press conference and ensure receipt of a press packet, please send an email to Rebecca Hansen at: icerebel62@hotmail. com

Contact persons:

From ESME: Rebecca Hansen: +45-25713577, icerebel62@hotmail. com

Svein Harvang: +47-90180049;

Patient contacts: Anette Gilje: +47-95934023, anette.gilje@ c2i.net;

Mette Schoeyen: +47-47844671, metteschoyen@ gmail.com> metteschoyen@ gmail.com

ESME website: <http://www.esme- eu.com/> www.esme-eu. com

Attachments:

Program “ME Conference for Healthcare Personnel”, Stavanger, Norway, Friday 12th of June.

Press Release ESME