Baroness Thornton's Open Letter to Countess Mar

References:
Countess of Mar slates NICE & Health Insurance Industry; Help ME Circle, 6 April 2009; see:
http://bit.ly/ UrDCZ
The Countess of Mar & Gognitive Behavioural Therapy; Help ME Circle, 8 April 2009; see:
http://bit.ly/ 6XGQi

All *Help ME Circle*'s articles may be reposted, if you leave the header intact.

~jan van roijen

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IN ANGER

Gurli Bagnall

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes - British Medical Journal)

This quotation came to mind when reading the open letter written by Baroness Thornton to the Countess of Mar on 2 April, 2009. That she felt the need to continue presenting her argument after the debate in the House of Lords in the form of an open letter, will serve to remind many readers that when ill health strikes, adult status is replaced with that of a minor.

An example of that is the request for assisted voluntary euthanasia by a patient suffering
intolerable pain as part of a terminal illness. The request in English speaking countries is rejected yet owners of similarly ill animals in the same countries could be prosecuted for cruelty if the pets were not afforded a merciful release.

In these circumstances the opinions of the sick are not called for and if given, are ignored. Doctors who have no conscience about causing disease, disability and death through "preventable medical error", adopt an attitude of outrage as they state, "We're here to save lives, not to take them."

In exercising their conscience votes, members of parliament impose their personal fears and religious beliefs upon the affected who understandably have an entirely different point of view.

Similarly, the guidelines for the management of Myalgic Encephalomyelitis (ME) as decided by NICE are concerned with politics, not reality. That NICE has the support of the medical profession in general, the Judiciary, and certain members of parliament and the House of Lords, including Baroness Thornton, speaks for itself.

One would have hoped the authorities at this level would take responsible action; would lift the edges of the carpet to see what is hidden underneath; would be concerned about the reasons for the contention.

Instead, and as the Baroness has ably demonstrated, there are many in authority who have no experience or knowledge of ME; who do not have the intellectual acumen or who simply cannot be bothered to seek the answers. Adding to the dangers for those who suffer the condition, are the conflicts of interest amongst the law makers.

The following comments made by Baroness Thornton need special mention.

QUOTE:

"…it would be inappropriate for me to comment on the quality of evidence that NICE used to
develop the guidelines as it is an independent body."

CONCERN:

This statement highlights that the Baroness is aware of the controversies in regard to the "evidence" used, yet she chose to make this an exercise in avoidance and contempt.

The quality of the evidence used by NICE and other "independent" bodies has been the concern raised too many times to be dismissed in this manner. If not appropriate during this debate, when IS it appropriate?

*****

QUOTE:

"It Is not helpful to differentiate between biomedical and psychosocial treatment as, based
on the currently available clinical evidence, patients are best served by a holistic approach."

CONCERNS:

1) This is at odds with the first quotation. Here, the Baroness has found it expedient to accept the "quality of evidence" which NICE has acted upon.

If one is charitable, one must assume that this was an instance where the Baroness considered it was too much trouble to look for the truth. However, it is difficult to accept that she is unaware that clinical evidence of physical disease is available in abundance and has been presented to NICE and other "independent bodies" time and again; and each time, it has been ignored.

It seems appropriate to remind the Baroness and those she supports, that people have died and are dying due to the lack of ethics which her letter so clearly displays.

2) To claim the NICE approach to management of ME is holistic, is absurd.

*****

QUOTE:

"The guidelines recognises there is no one form of treatment to suit every patient and it does not
force patients into treatments they do not want. In fact, the guideline emphasises a collaborative
relationship between clinician and patient…"

CONCERN:

This is no doubt the reality for those who can afford private, specialist care. However, where illness compromises the financial status to the point of poverty, it is NOT. A patient in this situation, takes what is on offer or faces the very real possibility of having his below-the-bread- line income removed. The Baroness shows a remarkable lack of empathy.

*****

QUOTE:

"It goes so far as to say that healthcare professionals should recognise that the person with CFS/ME is in charge of the aims of the treatment programme."

COMMENT:

The Baroness is no doubt skilled in many areas, but expertise in the intricacies of entertaining does not offer experience in THIS field. Her statement is soout of touch it would be laughable if it were not so tragic.

*****

THE MOST BREATHTAKING QUOTE OF ALL:

"CBT is a rehabilitative approach designed to offer patients practical steps to help them manage their physical symptoms. "

COMMENT:

The Collins Concise Dictionary defines the following words:

a) "convalesce" is to recover from illness, injury or the after effects of a surgical procedure.

b) To "recuperate" is to recover from illness or exhaustion or financial losss.

c) To rehabilitate is to help (a physically or mentally disabled person or an ex-prisoner) to readapt to society or a new job as by vocational guidance, retraining or therapy; to restore to former position or rank; to restore the good reputation of.

An example of common usage as found in the reference software of the Mac OS X computer, reads as follows: "…such rehabilitative techniques as prisons without bars".

Within living memory, the common usage of "rehabilitation" referred to criminals while
"convalescence" and "recuperation" referred to those recovering from an illness or injury. At what point did disease become synonymous with criminality? Certainly it demonstrates a change in the attitudes to the sick and the dying by the medical profession and other bodies of authority.

That which has not as yet changed, is this: be it convalescence, recuperation or rehabilitation,
recovery has to occur first and be part and parcel of the process.

Has the Baroness taken the process a step further? Are her choice of words signalling another change in attitude? A change in which the patient goes straight from onset of disease to the rehabilitative approach; namely, CBT?

Are the "practical steps to help patients manage their physical symptoms" another way of telling
seriously diseased and dying people to take up their beds and walk? When can we expect CBT
"rehabilitative treatment" to replace chemotherapy, insulin, antibiotics, beta blockers etc ?

Is the message to the terminally ill who have had voluntary euthanasia rejected: "Stop malingering! Get back to work!"?

Where did such philosophies come from, and what sort of people embrace them?

Baroness Thornton's letter presents a typical picture of the problems ME victims face. The
sufferers are at the mercy of authorities who are out of touch, who have no sense of reality, who
have no conscience, who have conflicts of interest and who give every impression of enjoying their monstrous actions.

The tone of the letter is coercive. The views of the people who are affected are dismissed as irrelevant; when it comes to their futures, they have no say. As always, they are expected to bow down to the opinions of those who have never endured a serious, long-term illness in their lives and to submit to the abuse of those in positions of privilege. How different it would be if the latter were struck down en masse, with ME.

Who could be more deserving?

Gurli Bagnall - Patients' Rights Campaigner
URSULA@xtra. co.nz

17 April, 2009