This support group is set up under the state body ME/CHRONIC FATIGUE SYNDROME/FIBROMYALGIA ASSOCIATION OF QUEENSLAND and is known as the ME/CFIDS/FM Far North Queensland Support Group.
The two major thrusts of the group at this stage is 1: to reach the people suffering from these diseases 2: to get information and training to bodies and health professionals in the far north.

Furhter information
tnq support group


   

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Medical scandal PERSECUTION OF PATIENTS?
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Saturday, November 06, 2004
ME / CFS and clinical trials in the UK

CRITICAL CONSIDERATIONS

                            Margaret Williams  (former medico-legal researcher)

                                                     1st November 2004

If democracy and not dictatorship prevails in the UK, then mindful of the recent submission of Professor David Healy from Cardiff University to the House of Commons Health Select Committee that "Every patient who enters a clinical trial in the United Kingdom is putting every Member of Parliament in a state of legal jeopardy"
(
http://www.meactionuk,org,uk/HoC_Select_Ctte_inquiry_into_Pharma) the UK ME community may wish to require as a matter of urgency that their Member of Parliament contacts in writing both the Chief Executive of the Medical Research Council (Professor Colin Blakemore) and the Chief Medical Officer (Professor Sir Liam Donaldson) -- with copies to both the Medical Defence Union and The Medical Protection Society -- requesting written assurance that their constituents with myalgic encephalomyelitis (ME) who are to take part in the MRC PACE trials on "CFS/ME and fibromyalgia (FM)", or who are to be referred to any of the newly funded centres for "CFS/ME/FM" will not, as a direct consequence of the psychiatric intervention involved, suffer a foreseeable deterioration in their medical condition in the light of the published evidence that such deterioration would seem to be inevitable.

For psychiatrists of the "Wessely School" and for state officials whom they advise simply to say that they do not accept such evidence is indefensible and is not justifiable in law (see "Clinical Review: How does evidence based guidance influence determination of medical negligence?"  Brian Hurwitz.  BMJ 2004:329:1024-1028). 

Professor Hurwitz states  "discretion requires to be exercised in accordance with the patient's best interests.  Evidence-based guidelines set normative standards but they do not constitute a de facto legal standard of care.  The bottom line is:  guidelines do not actually set legal standards for clinical care".

MPs might therefore be urged to request a credible explanation as to why both the MRC trials and the new centres will be employing cognitive behavioural therapy (CBT) and graded exercise therapy (GET) when there is significant publicly available evidence that such regimes may be actively harmful to those with ME / CFS because they are based on the psychiatrists' discredited assertion that "CFS/ME" is a "faulty belief system" that can be "corrected" by CBT and incremental aerobic exercise regimes.

Substantial mainstream published evidence that the psychiatrists are wrong was brought to the attention of both Professor Sir Liam Donaldson and Professor Colin Blakemore themselves, as well as to key members of the CMO's Working Group on "CFS/ME" and to members of the MRC Research Advisory Group on "CFS/ME" but it has been comprehensively ignored.  It will in due course also be put before the National Institute for Clinical Excellence (NICE) when that body begins accepting submissions (probably in February 2005).

The issue is whether or not compulsory exercise regimes and "rehabilitative programmes" may be harmful to those with ME / CFS.

In 1999 Professor Paul Cheney from the US went on record as stating: "The most important thing about exercise is not to have (patients with ME / CFS) do aerobic exercise.  I believe that even progressive aerobic exercise is counter-productive.  If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA"  (Lecture given in Orlando, Florida at the International Congress of Bioenergetic Medicine, 5th-7th February 1999).

Significantly, there is now further supportive evidence that has emerged from the 7th AACFS International Conference held in Madison, Wisconsin, from 8-10th October 2004: "An analysis of metabolic features using MRSI (magnetic resonance spectroscopy imaging) showed elevated lactate levels, which suggests mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy".

Given this evidence, how can forced aerobic exercise be beneficial to such patients?  Will the MRC trial participants be screened for such abnormalities before taking part in the aerobic exercise regimes that are the basis of the trial?

Since as long ago as 1996 it has been known that those with ME / CFS have abnormal lung function tests, with a significant reduction in all lung function parameters tested (see "Lung function test findings in patients with chronic fatigue syndrome"  De Lorenzo et al.   Australia and New Zealand Journal of Medicine 1996:26:4:563-564), and Jo Nijs from Belgium presented evidence at the Wisconsin international conference of underlying lung damage in ME / CFS through intracellular immune dysregulation with impairment of cardiopulmonary function.

How can forced aerobic exercise regimes be guaranteed to be harmless where there is existing underlying lung damage?  What prior screening measures will be undertaken by the psychiatrists to determine whether or not trial participants have existing lung damage, or will their lack of fitness simply be ascribed to "de-conditioning"?

Further evidence of impaired oxygen up-take in those with ME / CFS was presented at the Wisconsin conference:  a Spanish study on aerobic exercise by Anna Garcia-Quintana provided evidence that in ME / CFS, the average maximal oxygen uptake was only 15.2, whilst for sedentary healthy controls it was 25.9, but for physically active controls it was 66.6. 

This accords with evidence from 1999 that showed impaired oxygen delivery to muscle in ME / CFS patients: oxygen delivery represents the ability to get oxygen into the small vessels of the muscle and the study demonstrated that ME / CFS patients had recovery rates for oxygen saturation that were 60% lower than normal subjects, leading to reduced exercise capacity  (see "Impaired oxygen delivery to muscle in chronic fatigue syndrome"  Kevin K McCully and  Benjamin H Natelson.  Clinical Science 1999:97:603-608).

How would forced aerobic graded exercise be beneficial to patients with reduced exercise capacity?

There is also evidence that many people with ME / CFS may have a serious heart problem.  In April 2003, Arnold Peckerman MD from New Jersey reported findings to the annual meeting of the American Physiological Society that demonstrated via a sophisticated test that after exercise, the heart of those with ME / CFS pumped less blood than it did at rest.  Normally the heart pumps out more blood on exercise, but this does not happen when ME / CFS patients are exercised.  Peckerman is on record as saying: "Basically we are talking about heart failure.  Chronic fatigue syndrome is a progressive disease".

Cardiologist Joseph Miller MD from Emory University agrees that these patients have serious heart problems:  "A drop in (blood pumped by the heart) during exercise is actually a marker of significant coronary artery obstruction".

What are the risks of forcing such patients to undertake aerobic exercise regimes and "push themselves back to fitness"?

The ME community will recall the case of Brynmor John MP who had ME but who was advised to exercise back to fitness; he dutifully tried to do so but collapsed and died coming out of the House of Commons gym.

Of concern is the knowledge that patients to be enrolled in these trials will apparently be required to sign a statement giving their written consent and waiving their right to sue for damages should any harm flow from participation in the MRC exercise trials.

Finally, the issue of case definition for trial participants remains controversial because at the Edinburgh Science Fest held on 9th April 2004, it is understood that psychiatrist Michael Sharpe informed attendees that the MRC PACE trials would include those with fibromyalgia as well as "CFS/ME" as it was desirable to have as wide a catchment as possible, and it is also understood that GPs are to be offered "incentives" to refer as many people as possible with fibromyalgia to the new centres. However, this seems to have been re-thought, because in the current issue of the ME Association newsletter (issue 92, October 2004), Michael Sharpe and his co-organisers now state: "patients who only have fibromyalgia will not come into the trial.  We will, however, note those who have both CFS/ME and fibromyalgia to see if having both affects response to treatments (sic)".

Given that fibromyalgia is a distinct diagnosis (ICD-10 M 79), the issue of obfuscation is real, not least because evidence from Wisconsin presented by Professor Robert Suhadolnick demonstrates that "the higher the RNase L activity, the lower the patient's ability to function.  These patients also have a low molecular weight 37 kDa RNase L which is not found in healthy controls, patients with depression or fibromyalgia patients".

Members of Parliament need to be fully aware of these facts in order to protect the best interests of their constituents.

ME International

Posted at 6.11.04 by fnqsupport
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Friday, October 08, 2004
SINISTER SABOTAGE AND GROSS VINDICTIVENESS

SINISTER SABOTAGE AND GROSS VINDICTIVENESS
As some people will be aware, both myself and Jane Bryant have been victims of two campaigns, waged against us as individuals and our families, by prominent members of the ME/CFS community. These campaigns were undertaken with the intent to place the welfare of me and my family (including my seriously ill daughter- an ME sufferer) and Jane Bryant and her son (another seriously ill ME child sufferer) at catastrophic risk.
I am now in a position to make public the particular vindictive campaign against myself that took place.
Dr Charles Shepherd, Medical Advisor, Company Secretary and Trustee to the Myalgic 'Encephalopathy' Association, had written to me and Jane a number of times with sinister but vague threats about some sort of 'investigation'. Jane and I received such an email from him Saturday evening.
I found out recently that Dr Shepherd had, with a number of cronies, made complaints against me to my University, with the intention of getting me disciplined and/ or sacked, for the 'crime' of making legitimate criticisms about his conduct, and that of others, and asking legitimate and relevant questions about this on the One Click Website.
To lose my job would have had catastrophic ramifications for the welfare of me and my family, especially as, like many families with family members suffering from ME/CFS, we are already in poverty, because of the social and material inequalities caused when a family member becomes severely disabled with a devastating illness for which there is little to no social support. My good name, character and modest career aspirations were also put in danger by the actions of Dr Shepherd and his crew.
I would also like to remind people that this is not the first time that Dr Shepherd has engaged in such vindictiveness against fellow professionals. These are detailed in the document 'Concepts of Accountability, available to read on the One Click Website.
Thankfully, good sense has prevailed. I recently received communication from my University, reminding me of my contractual right to express public and personal political, religious, social and academic views, unconnected to the University, and that it would be inappropriate for my University to intervene. The matter is closed.
This has come as a great relief. But, it need hardly be said that the stress caused to myself and my family has affected the health of my daughter adversely.
Dr Shepherd and his cohorts should, quite simply, be ashamed of themselves. But although I was shocked by their behaviour, I am not surprised. Their actions are of people whose own wrongful actions have come under the spotlight, and who lash out in inappropriate ways, partly to divert from their own misdeeds, and partly out of irrational hatred and lack of integrity. When faced with the choice of answering questions and accepting constructive criticism, or ruining the lives of those who make those questions or criticism, such people always choose to do the latter. Time and time again Dr Shepherd has caused terrible trouble for people having the courage to disagree with him, or have a different viewpoint, or take him to task for his behaviour: people who have worked hard to make things better for ME/CFS sufferers. This should set alarm bells ringing in the collective consciousness of the ME/CFS community. Whose best interests are served by such behaviour? Certainly not that of the ME/CFS community itself.
On an even more sinister note, something far worse has been attempted to be done to Jane Bryant by another prominent person whose actions have been investigated and critiqued by One Click: a truly heinous action, which may be one of the worst things that can be done to a mother, placing her family at even more catastrophic risk. This appalling act emphasises, in stark focus, how, within ME/CFS, there are some pretty dangerous foxes in charge of the henhouse.
Certainly these appalling actions of the past few weeks, added to the years of appalling actions by those claiming to represent ME/CFS sufferers' interests, indicate just how much is at stake, and how much in danger ME/CFS sufferers and their advocates truly are, from those with sinister, vested interests: claiming to be on our side, but in reality sabotaging all efforts to improve the conditions facing the ME/CFS community.
Angela Kennedy.

ME International

Posted at 8.10.04 by fnqsupport
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Tuesday, September 21, 2004
Big Brother in waiting ??


PSYCHIATRY AND PERFIDY By Gurli Bagnall July, 2004
"Academic psychiatry has all but lost contact with the population it is supposed to serve..Criticism is, if not actively discouraged, then politely but very firmly ignored."
N. McLaren, M.D. Psychiatrist, Australia, 1999
In the face of undeniable evidence to the contrary, X never admits to being wrong. In his (or her) mind, he is omnipotent.
As a self perceived superior being, he demonstrates contempt towards others who he has neither met nor spoken to. He attacks their characters and personalities and makes no secret of his displeasure if his judgment is questioned.
The [psychiatric] Diagnostic Manual no doubt lists a condition or two under "Personality Disorders" that match the behaviour, but what happens when people in positions of power, such as politicians and medical diagnosticians, fit the description? What happens to society when the same politicians and diagnosticians receive pecuniary and other rewards for manufacturing mental disorders where none exist?
____________________________________________________________
Under the New Freedom Commission on Mental Health Act, President Bush has announced his plans to unveil a "sweeping mental health initiative" in July2004. "Sweeping" is the right word for he intends to "screen the whole US population for mental illness" and those deemed to be psychiatrically disturbed, will receive "state-of-the- art treatments" using "specific medications for specific conditions". Needless to say, the psychiatric community in general approves wholeheartedly and is extremely happy. (British Medical Journal, 19 June 2004).
Even though funding is urgently needed for more research into conditions such as cancer, AIDS, and the many poorly understood diseases that plague society today, Bush has been able to set aside millions of tax payer dollars to fund this grandiose scheme.
On looking into the matter further, one finds that President Bush and his family have financial interests in Eli Lilly, a giant pharmaceutical corporation which produces amongst its psychotropic (mind altering) products, the anti-psychotic drug, Zyprexa. This drug just happens to be one of the "specific medications" to be used in the proposed nationwide treatment programme. It also happens to have grossed $US4.28 billion internationally in 2003. (ZMagazine,Volume 17, No. 5. 24 May, 2004)
It has been said that democracies are no longer run by the people for the people but rather by big corporations that pay our elected representatives and other authorities to do their bidding. Dr.Stefan Kruszewski, one of two whistleblowers who saw the abuse of power in their state of Pensnsylvania ".charges in his suit that a number of drug companies used 'political friendships, money and other emoluments' to achieve 'a level of influence with the Pennsylvania's state government' and 'with the current president of the United States, George W. Bush to promote the use of their products in violation of the law and rights of  Pennsylvania citizens'." (BMJ 10 July, 2004.)
If this is true, Bush is not just looking for dividends from Eli Lilly.
So to whom does his new Commission offer freedom?
Certainly not ordinary citizens of the United States.
The United Kingdom is a signatory to the Council of Europe Strasbourg Convention on Human Rights and Biomedicine. This Council is promoting the concept of using certain people in medical trials without their consent.
They are:
(i) Those deemed to be mentally ill (many of whom, as experience has shown, have a misdiagnosed physical condition).
(ii) Those for whom no known treatment is effective (for example sufferers of Myalgic Encephalomyelitis [ME] or Gulf War Syndrome [GWS]).
(iii) Children (who will be denied the benefits of parental protection).
The influence of Simon Wessely (professor of psychiatry at King's College, London), and his followers has already been instrumental in the removal of children from responsible and caring parents -children who were desperately ill with ME but who were nevertheless forcibly taken from their homes and admitted to psychiatric wards where their health generally deteriorated. The practice continues and the same abuse of power has occurred and occurs in the United States as well.
One wonders where the phrase "human rights" fits into this picture.
The trend to turn poorly understood diseases and normal human behaviour into psychiatric disorders can also be seen in Australia.
If we are to believe psychiatrist, Ian Hickie and his colleagues, the "epidemic" is rampant there. Although no doubt similar to other countries, the evolvement of the situation in Australia, particularly in regard to ME, is interesting.
In looking through the literature from 1990, one finds that Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker were quite sure ME(or chronic fatigue syndrome as they called it by then) was a physical disease: ". we have demonstrated that while depression and anxiety are common symptoms in people suffering from CFS" [as indeed they are in cancer, AIDS and other physical diseases] "there is no evidence from our well-defined sample to support the hypothesis that CFS is a somatic presentation of an underlying psychological disorder. In particular there is no evidence that CFS is a variant or expression of a depressive disorder.
Instead, our study supports the hypothesis that the current psychological symptoms of patients with CFS are a consequence of the disorder rather than evidence of antecedent vulnerability."(1) And in 1992, the same authors with the exception of Parker, confirmed their belief that "..the lack of strong associations between depression and immunological disturbance prior to treatment are less supportive of the view that CFS is primarily a form of depressive disorder or that immunological dysfunction in patients with CFS is secondary to concurrent depression." (2)
Not long after and with a speed sufficient to boggle the mind, they executed a U-turn: "Though most patients with the chronic fatigue syndrome improve, a substantial proportion remain functionally impaired. Psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological variables."
"Patients who had not improved had a significantly higher rate of a primary psychiatric diagnosis at follow up."(3) Despite the vast numbers of published research papers which detail physical abnormalities in ME, Hickie ignored their existence as did Wessely
in the UK.
Three months later, the authors went a stage further when they introduced physical rehabilitation, exercise, cognitive behavioural therapy and antidepressants as treatments for CFS. They described this approach as "scientific methodology" and cast doubt upon patients' assessments of their own levels of fatigue and disability by describing them as "subjective" (4)­­­­­
By May 1996, Hickie and Lloyd were ready to execute another U turn.
Where the typical ME sufferer had previously been described as a successful person with a Type A personality - an ambitious go-getter who generally originated from the middle classes - the finger was now pointed in another direction.
 "The factors associated with prolonged fatigue were concurrent with psychological disorder, female gender, lower socioeconomic status and few total years of education."(5)
If a point of view, however erroneous, is repeated often enough, it will eventually be believed.
The situation gets even more interesting. In 1998, Hickie and others invented a new  psychiatric "disorder" which they called non- melancholic depression - a "disorder" that could expediently be applied to anyone irrespective of his or her mental state and
particularly to ME/CFS sufferers. (6)
In the same year, Hickie was ready to introduce the concept of a ".range of rating strategies.. Results indicate some of the difficulties in operationalising determinants that may contribute to and sub-type the non-melancholic depressors, and demonstrate the advantages of using a range of rating strategies and raters. In this study psychiatric-generated judgments are clearly favoured.." (6)
The rest of us have come to know these "rating strategies" as questionnaires which can hardly be described as scientific - particularly when the answers are manipulated to fit a predetermined outcome. For example in a report relating to a questionnaire directed at Gulf War veterans, the "scientists" stated: ".. We adjusted [the answers] for confounding factors that had the potential to distort the results, such as education, rank." (7)
Diagnoses of mental disorders depend entirely upon the competence and lack of bias of the diagnostician for there are no diagnostic laboratory tests. If the above quoted mumbo-jumbo tells us nothing else, it does alert the reader to the fact that plans were afoot to devise a method of mass assessment for mental disorders by unscientific means. And, incidentally, a wonderful way to absorb ME/CFS into the melting pot.
On the other side of the world, the push continued. Wessely, like his Australian counterparts, had been saturating both the medical and general media with the view that chronic fatigue syndrome is a psychiatric disorder. In a paper entitled "Fatigue and psychiatric disorder: different or the same?" published in 1999, he, Hickie and others wrote: "Fatigue and psychiatric morbidity correlate highly with each other and across time. Most patients with persistent fatigue also have psychiatric disorder."(8)
The attitude clearly presented (and presents) dangers to those suffering undiagnosed heart conditions, respiratory disorders or any number of other undiagnosed physical diseases.
Nevertheless, our intrepid "researchers" moved right along, deterred not at all by such issues. Hickie expanded on the plan to introduce a rating system relating to what was loosely described as fatigue, anxiety and depression (9). Listed were a number of signs and symptoms which, if experienced during the past two weeks, were supposed to indicate psychiatric disorder. Included are the following which were picked at random: "global fatigue", "poor memory", "pains in arms and legs", "headaches", "feeling cranky", "tenderglands", "incontinence", "swollen joints" and "loss of vision". (10)
 While the authors presented these to their colleagues as common in mental disorders, readers will recognize their relevance to physical illnesses and in particular to neurological diseases such as ME/CFS. Not only that, but even a well person has the odd "off" day during which he will experience one or more of the listed signs and/or symptoms, and unless the authors of this piece of nonsense come from another planet, that includes them.
Having softened up the medical and general communities since the early 1990s, Hickie was ready to announce the results of his "study" based on the questionnaire (known as the SPHERE), thousands of which had been distributed to 386 doctors' waiting rooms.
On Monday July 16, 2001, the Sydney Morning Herald announced in large, bold letters that "Six in 10 GP patients have mental illness."
This was the result found in "..a ground breaking study of 46,000 patients...[and] Professor Ian Hickie, said the findings showed everyone visiting a GP should be checked for mental illness - even if they were attending for another reason and did not volunteer psychological symptoms."
Much legitimate criticism can be leveled at the questionnaire, not least of which is deception. At the top of the patient's copy, the instructions started with the words: "We would like to know about your general health.." General health, indeed!!
The doctor's copy (or template as it was called) gave two sets of instructions (i) The method by which patients' answers should be evaluated and (ii) at the top of the page in capital letters: "DO NOT PHOTOCOPY THIS PAGE FOR USE WITH PATIENTS."
And no wonder! The 12 sample questions that followed were divided into two columns. The first was headed "Psychological Distress" and the second, "Somatic Distress".
SPHERE stands for "Somatic and Psychological Health Report", and had the real purpose of the questionnaire been honestly stated on the patient's copy, it is doubtful if many would have bothered to fill it in.
The question is, how was this "ground breaking study" funded? Who stood to gain the most from a dramatic increase in the prescribing of psychiatric drugs? We need look no further than the current shenanigans in the US. But the answer in regard to Australia had already been stated.
It came across very clearly in an ABC TV programme, "Too Much Medicine", which was aired on 19 November, 1998.
From the transcript we can see that narrator, Ray Moynihan, made the following point: "Drug companies spend over a million dollars a day pushing their products but they're not just selling pills, they're increasingly promoting the diseases to go with them." (For instance:
Social Phobia which the rest of us know as shyness, and Pervasive Refusal Syndrome diagnosed typically when a child suffering ME does not respond favourably to psychiatric treatment .)
Hickie: "We've not had very good public awareness of the size of mental health issues, nor the size of the problem to deal with.."
Moynihan: ".aren't you..by publicizing such huge estimates, helping build a very large market for those selling cures?'
Hickie: "Yes. I don't see that as a problem at all."
Those who have been on the receiving end of preventable medical error (or should it be preventable medical "error"?) will not be impressed with Hickie 's attitude. The statistics regarding preventable medical error based on hospital records speak for themselves.
(GP figures are not known.)Preventable medical error is (a) the third biggest killer after heart disease and cancer (11) and (b) the cause of a third of diseases and disabilities. (12)
If there is still doubt in the minds of some about the international drive to categorize ME/CFS as a psychiatric disorder, the following must surely dispel it:
(i) In August 2001, the Centre for Diseases Control (CDC) in the USA, announced on their web site, that the University of New South Wales, Australia, had been awarded 82% of the costs to conduct research into "Post-Infective Fatigue: A Model for Chronic Fatigue Syndrome". While this quite rightly specified investigation into "persistent microbial antigens", it also specified investigation into "psychological factors [that] perpetuate physical symptoms after infection" and the evaluation of the "contributions of premorbid and concurrent psychiatric disorders to the persistence of post infective fatigue." One would be hard pressed to find the same requirements for studies into other neurological diseases.

Hickie, Lloyd and Wakefield were the recipients of the research funding which amounted to Aus.$958,289 per annum. This afforded them ample scope to wield the SPHERE questionnaire to the detriment of most of the 60% of patients nationwide who were deemed to be mentally disturbed and, in particular, the section which represents the ME/CFS community.
(ii) The CDC initiated further research into CFS and a transcript from the CDC site (14/03/03) showed that amongst the international participants, Hickie and Lloyd represented Australia. The resulting paper was published in December 2003 and it stated: "We recommend
that investigators use the Somatic and Psychological Health Report (SPHERE) as a screening instrument for potential participants in research studies of CFS." (13)
In the meantime and despite all, the WHO International Classification of Diseases has for the past 40 years, listed ME as a neurological disease and there, we have been assured, is where the organization intends to leave it. (ICD No.10 Ref. G93.3)
In the history of medicine and in particular, psychiatry, there is no shortage of delusions of superiority and the abuse of power has always been present. In 1920, German professor of psychiatry, Alfred Hoch, wrote a book entitled "Permission to Destroy Life Unworthy of Life". His proposals were enacted in 1940 and by 1944, nearly 300,000 "mental defectives" had met their deaths at the hands of Hoch and his colleagues.
Some years ago, Jose M.R. Delgado, Associate Director of Neuropsychiatry at Yale University Medical School, pushed another barrow. "We need a programme of psychosurgery for political control of our society," he proclaimed. "The purpose is physical control of the mind.Man does not have the right to develop his own mind."
Similar views were recorded in the Los Angeles Times on June 25, 1973 in regard to the drug, lithium. A psychiatrist by name of Fieve expressed the opinion that 6 million Americans should be on it. "Other lithium advocates had a still more grandiose and shocking vision - putting everyone in the United States on the drug..How? With lithium in our drinking water." (14)
And then along comes Bush..!
The pattern that has emerged in the last two or three decades is not new,but the greed for power is more ambitious than ever before.The lay community needs to be very vigilant or the day will come when mind altering drugs and electric shock treatment will routinely be prescribed along with our antibiotics and beta blockers.
"I observe the physician with the same diligence as the disease," said one John Donne of whom I know nothing - except that he was a wise man. Consumer, beware!
_____________________
References

1 "The Psychiatric Status of Patients with the Chronic Fatigue Syndrome"
Ian Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker. British Journal of Psychiatry (1990). 156, 534-540
2 Australian and New Zealand Journal of psychiatry 1992; 26:249-256
3 BMJ volume 308, 19 March 1994
4 The American Journal of Medicine Vol. 96, June 1994
5 MJA 1996; 154:585-588
6 Australian and New Zealand Journal of Psychiatry 1998; 32: 104-111
7 "Prevalence of Gulf war veterans who believe they have Gulf war syndrome"
T Chalder, M Hotof, C Unwin, L Hull, K Ismail, A David, S Wessely. BMJ 2001;323-476 (1 September 2001)
8 Psychological Medicine, 1999. 29, 863-868
9 Australian and New Zealand Journal of Psychiatry 1999, 33:545-552
10 "What is chronic fatigue syndrome? Heterogeneity within an international multicentre study". Australian and New Zealand Journal of Psychiatry 2001; 35:520-527
11 "Is US health really the best in the world?" B Starfield, MD, MPH. JAMA Volume 284, No.4, 26 July, 2000
 
12 "Epidemiology of medical error" Saul, Weingart, Wilson, Gibberd, Harrison BMJ Volume 320, 18 March, 2000
13 "Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution" http://wwwbiomedcentral.com/1472-6963/3/25
14 "Toxic Psychiatry" by Peter Breggan, M.D.

Posted at 21.9.04 by fnqsupport
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Monday, August 23, 2004
Questions for AfME

More CBT/GET propaganda being rolled out by the Barton and Marsh
See the programme of the conference below.
Please see a few of the suggested questions that could be asked.

SUSSEX ME/CFS SOCIETY
(Incorporating KENT ME SOCIETY)
4 Braemore Court Kingsway Hove BN3 4FG
Tel: 01273 778890
Email: admin.sussesme@btopenworld.com

Greetings!
Thank you for purchasing the ticket(s) for the Kent Medical Conference being held by the Sussex & ME/CFS Society. The event will take place at Aylesford Priory on the 10th September starting at 2pm. Please find enclosed a map with full directions of how to get to The Friars where the priory is located. You will also find enclosed your unique ticket(s) which you will need to bring with you on the day as the space is limited. The program for the day is as follows:

1.45pm Doors open with light refreshments
2.05pm Welcome by Sussex & Kent ME/CFS Society Introductions
2.10pm Talk by Chris Clark (CEO of Action for ME)
2.30pm Talk by Professor Leslie Findley (Consultant Neurologist at Romford ME/CFS clinic)
3.20pm Break with light refreshments
3.40pm Talk by Mary-Jane Willows (CEO of Association of Young people with ME)
3.45pm Talk by Dr. Mario Vergara (on behalf of Kent & Medway PCTs Steering group for the new specialist NHS ME/CFS Services)
3.55 pm Questions and Answers session for the panel.
4.30pm Closing address and Finish
We hope you enjoy the Conference and we are sure that all attending will find it very useful. If you have any queries please contact Joe Marsh on 01273 778890.
(Programme may be subject to change)
PATRONS Dr Des Turner MP. Sir Andrew Bowden MBE. Elizabeth, Countess of Craven. David Lepper MP
ADVISERS Professor Anthony Pinching. Dr. Keith Hine MD FRCP. Dr Anne Dew MBBS MRCGP. Dr Alan Stewart MB MRCP. Dr Kamal Patel MRCPCH MSc Charity 1082681
----------------------------------------------------------------------
For AfME.
1. Why has AfME not held an Annual General Meeting that involves its subscribers since 19996, for the last eight years?
2. Why has AfME not answered the twenty-one questions posed in The AfME Dossier 2004, despite the fact that the Chair of Trustees wrote to say that the matter has been under consideration since March of this year?
3. Why is AfME colluding and sanctioning the fraudulent PACE & FINE psychiatric clinical trials?
For Professor Findley
1. Where are the legions of the lost recovered from ME/CFS since Findley has been playing psychiatric games with ME/CFS sufferers for many a year?
For AYME
1. Why did AYME refuse to co-operate with the Observer newspaper in and in-depth exposure of the plight of ME/CFS children?
2. Why is AYME co-operating (via one of their medical advisers) with the CBT/GET Harrow & Hillingdon bid?
3. Why is AYME promoting CBT/GET for children when these treatments have not been tested on ME/CFS children and the Chief Medical Officer's Working Group Report states so?
For Dr. Mario Vergara of Kent & Medway PCT
1. Why are the Canadian criteria that have been used for clinical purposes on 25,000 ME/CFS patients worldwide not being used for ME/CFS centres by the Kent & Medway PCT? These are the most up to date clinical criteria in the field and failure to use them is thus considerably more than a medical oversight.
2. Why, instead, are ME/CFS patients being fed into fraudulent psychiatric clinical trials in relation to treatments such as CBT/GET that have been shown in survey after survey (including one from AfME its very self) to damage sufferers?
For Colin Barton & Joe Marsh of the Kent & Sussex ME/CFS Society
1. Do you gentlemen suffer/or have you suffered from mental disorder idiopathic chronic fatigue (F48) rather that ME/CFS (ICD-10 G93.3) neurological brain disease?
2. If the former is the case, is this why you ceaselessly promote CBT/GET that helps sufferers from mental disorder idiopathic chronic fatigue (F48) but that damages ME/CFS sufferers?
Dear friends. These are just a very few of the questions that could be posed.

THEONECLICKPROTEST

ME International

Posted at 23.8.04 by fnqsupport
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Thursday, July 15, 2004
ME Association

Denial of membership by ME Association

Denial of membership to Suzy Chapman [Carer of young adult with ME, List owner of FreeMEuk and MEinformUK] by the Board of Trustees of the ME Association.
I feel very strongly that the issue of the Board of Trustees' decision to deny me membership of the ME Association needs to be kept in the public domain. I am therefore appending a copy of the paper letter I sent this morning to Dr Charles Shepherd, Company Secretary, ME Association.
A paper copy of my letter to the Company Secretary was CC'd to Ms Christine Llewellyn, Chairman of the Board of Trustees and electronic copies were CCd to: Rick Osman, Tony Britton, Ewan Dale, Diane Newman, Angela Flack, Charles Shepherd and Christine Llewellyn.
Beneath this letter is a copy of the communication I received yesterday (12 July) notifying me that the Board of Trustees have denied my application to become a member of the Association.
Suzy Chapman
________________________________________________________________

(Address and telephone number)
The Board of Trustees
ME Association
4 Top Angel
Buckingham Industrial Park
Buckingham MK18 1TH
13 July 2004
For the attention of: Dr Charles Shepherd, Acting Company Secretary
with copy to Ms Christine Llewellyn, Chairman
Dear Dr Shepherd,
Re: Denial of application for membership of the ME Association Yesterday I received a letter signed 'for and on behalf of' the Board of Trustees informing me that the Board has declined my application for membership.
I shall require the following questions to be addressed:
1] Are ALL applications for membership received by the MEA's Head Office considered by the Board of Trustees and what is the usual procedure for this? Have there been any changes in these procedures over the last 7 months and when were they first adopted?
2] Was my application considered and discussed at a meeting of the Board of Trustees and entered in the minutes of that meeting? or
3] Was my application considered and discussed by ALL members of the Board using an acceptable method of communication other than through the process of a Board meeting or was this discussed using such a method by SOME members of the Board? or
4] Was the decision to deny my application made under Officer's Action/Chairperson Decision and as such was implemented without the need for consideration by the Board at a meeting of the Board of Trustees? or
5] Was the denial of membership made by a member of staff in the name of the Board of Trustees according to prior instruction and not discussed by Board members either at a Board meeting or by other means, following receipt of the application?
6] What polices and procedures does the Board of Trustees have in place for deciding on an individual's suitability for becoming a member of the Association?
7] What criteria does the Association use to judge if an individual is deemed fit to become a member of the Association? What is the reason or reasons for my application being denied?
8] What right of appeal do individuals have whose applications have been denied, and what is the appeals procedure?
9] Why have I not been informed of the Association's policies and procedures for approving memberships and right to appeal following the rejection of my application?
Yours sincerely,
Suzy Chapman
CC Christine Llewellyn, Chairman
________________________________________________________

Denial of membership by Board of Trustees, ME Association
On 30th June I sent in an application form for membership of the ME Association together with a cheque for £15.00.
On Monday, 13 July I received the following letter from the ME Association, sent 'Special delivery'.
______________________________________________

The ME Association
4 Top Angel
Buckingham Industrial Park
MK18 1TH
Mrs Susan Chapman
(Address)
09 July 2004
Dear Mrs Chapman
It is with regret that in this instance the Board of Trustees have declined your application for membership.
We therefore enclose your cheque here with.
Yours sincerely,
pp (indecipherable signature)
Board of Trustees
_______________________________________________________


ME International

Posted at 15.7.04 by fnqsupport
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Wednesday, July 14, 2004
Advocacy and CFS/ME Associations in America

CFSAC Perspective, Advocacy and the CFIDS Association of America

 

The CFIDS Association of America (CAA) seems to be more and more out oftouch with the patient community. They had most of their staff/board membersin DC for the weekend for their board meeting and also at the CFSAC meetingBut although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see atthe meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that theCAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they arenow down to just over 5000 dues paying members - which dropped by over 1000 members within one year.

From CFSAC Perspective, Advocacy and the CFIDS Association of America

The CFIDS Association of America (CAA) seems to be more and more out of touch with the patient community. They had most of their staff/board members in DC for the weekend for their board meeting and also at the CFSAC meeting. But although their membership and patient support is plummeting and we convey this to the committee and the government, this is what they see at the meeting. (And from the patient perspective it is difficult to reconcile what this must have cost, since it would probably be safe to assume that the CAA paid expenses for those attending.) Since I made my presentation to the committee, I have learned that according to their 2003 tax forms, they are now down to just over 5000 dues paying members - which dropped by over 1000 members within one year.

But from some comments and follow-up reports, it appears they are trying to sway patient positions - there isn't going to be a name change and it really wasn't a good idea anyway so forget about it and move on. So they are trying to convince everyone, it's just the name - yet patients know how damaging the name CFS has been, and saying it doesn't matter is not true: Dr. Jason's attribution study proved that it does matter. Patients do know better.

Yet in spite of the spin, it is difficult to accept as this was their position and statement on their website up until last fall -- when the committee voted against it at the December meeting:

~~~~~~~~~~~~~~~~~~~~

"Effective name change leadership: An Association update
Our commitment is unequivocal: Leaders of The CFIDS Association of America steadfastly support a name change for CFS. The Association recognizes the stigma associated with the term "chronic fatigue syndrome" and the damage that the name itself does to patients striving for understanding and support from family, friends and health-care providers. More recently the Association has led responsible and responsive efforts to make progress on a name change and has supported others' constructive efforts."
~~~~~~~~~~~~~~~~~~~~~

After years of their professed commitment to a name change -- well now it's not a good idea -- and there isn't going to be one -- ?? perhaps because they refused to actively support it and the expressed demands of the constituents they purport to serve. Patients have been extremely unified in this area and the CAA now seems to be trying to manipulate opinion on this. Their role continues to be dubious and cause for concern.
It seems overall that regarding the name change, despite the committees claims to the contrary, the fix was in anyway, considering how swiftly it was over. And it appears that Kim Kenney McCleary was involved, as she was asked at the September CFSAC meeting by Dr. Bell to help the committee develop a response to the issue. Dr. Fields has been overtly committed to openness and transparency and encouraging open deliberations and seems surprising that he allowed this regardless.
Some say that the CAA has been very effective. Well they have - as a business - not at anything that has significantly helped patients. Patients are a commodity to run the business, while they forge careers, collect large salaries and take paid trips to DC for the weekend. There is the perception that they have power, and they may to some degree, but is more of an illusion than a reality. They know where the power is and are good at attaching themselves to it, but again, power without influence does not accomplish what we need in the patient community.
So the CAA's concern is now to establish CFS as a "serious public health concern." No one would argue to the contrary, but the main focus is on more money - not how it is being utilized (i.e., for the CDC to study fatigue and open fatigue clinics while the other research centers are closing???). But since their patient base is dwindling, they in fact depend on government money, so the more the government - the more they can keep getting from the CDC.
That million dollar CDC/CAA education campaign has hardly been well received by the patient community and indeed again seems much more effective as free advertising for the CAA courtesy of our tax money, which they do need to attract more members, as they still need to have the illusion of being a patient organization. The patient community has asked the CAA and the committee how this award was determined and who is involved and what oversight there is as to content and implementation. It was said to be competitive and collaborative but have seen nothing that would indicate that this is the case. And we do not accept this as CDC's commitment to "educating," especially physicians, about the illness, as this has fallen short of acceptable expectations.
Since these awards are made on a yearly basis, they should be discontinued until there is clarification as to the content and oversight, as this is our tax money. Please contact the CDC and the following and request that this CDC/CAA education contract be terminated until these matters are satisfactorily resolved. If not then we will request Congressional action.
Diana Saba
Retired Nurse
FM CFS/CFIDS/ME and Related Illnesses/Disorders

ME International

Posted at 14.7.04 by fnqsupport
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Saturday, July 10, 2004
Chronic Fatigue Syndrome - Myalgic Encrphalomyelitis

The following post has appeared from Charles Shepherd, MEA trustee, elsewhere on the internet today (see below).

This is, unfortunately, an opportunist attack on Jane Bryant, on the back of the feeding frenzy that has been going on by various people in recent days.
Contrary to his implied claim, Dr Shepherd has NOT acted with understanding when faced with the legitimate concerns of others about the MEA, but has instead evaded answering legitimate questions, waged a campaign of denigration against those asking the questions such as Jane Bryant, and made vague doom-laden statements in order to frighten people off asking these legitimate questions.
People with ME/CFS in Britain, and their advocates, are currently deeply disenfranchised. Both the MEA and Action for ME have colluded with the psychiatric lobby in promoting the 'psycho-social' approach which has damaged the lives of so many people.
Since then , the ME/CFS community have given the MEA a chance to pull their socks up. Unfortunately, the MEA have made many uneasy by their adherence to the term 'opathy', their refusal to openly support the Canada Guidelines, their refusal to answer the questions about their legal and financial status, the 27 Medical Advisors, the status of the London Criteria, and the apparent lack of a forceful strategy to counteract the damage done by the psychiatric lobby which the MEA had assisted in the past.
Are concerns about any of these issues unreasonable?
No right-minded person could claim so, and yet Dr Shepherd has not provided a single attempt to answer Jane Bryant's questions with any openness or honesty, instead adopting a belligerent stance against her.
His supporters have then gone on to make sustained attacks on Jane Bryant, making vague, highly unsubstantial but clearly denigratory and inflammatory statements about her. The constant refusal to be accountable to the very people BOTH these charities represent has forced the actions that Dr Shepherd complains about.
I am not a member of either AfME nor the MEA. Nor is my daughter. YET, both will claim to be representing people like my daughter. They are both invited, as I understand it, to sit on the NICE clinical guidelines committee. HOW will these charities force through the interests of ME/CFS sufferers? CAN either of them be relied upon to ensure the dangerous psychiatric hegemony do NOT get their way to force CBT/GET on sufferers at the expense of clinical investigation and proper care? If they CAN'T, then why on earth should ANY ME/CFS sufferer or advocate allow them to speak for us?
The uncomfortable truth is that the two adult charities in this country have been failing ME/CFS sufferers. the MEA have been given a chance to right this, but so far have some up with very little to reassure and a lot to worry the people who put so much faith in them. Attacking Jane Bryant has become a major displacement tactic. Neither charity will survive if they continue this arrogant, sinister avoidance of the issues.
ME/CFS sufferers in Britain, and their advocates, are faced with a bleak future, if the present actions of both the adult charities are anything to go by. Unless both charities radically change their current approaches, NICE guidelines will be hijacked by the psychiatric lobby without efffective opposition, the PACE and FINE trials will go ahead without effective opposition, the Wessely School will claim the dangerous treatments of CBT/GET as 'successful', enabling them to be forced onto people, Canada will be ignored, and the WHO classification will be destabilised and possibly lost, while we allow the sport of scapegoating Jane Bryant, a woman who has done SO much positive, effective work for the ME/CFS community, to carry on.
Are we prepared to allow this to happen? I know I'm not. But unless a groundswell of political resistance to the psychiatric lobby and those that are colluding with them can be sustained, these are exactly the things that will happen.
ONECLICK, whether one 'likes' them (us) or not, has achieved an enormous amount of work, has gathered vital information, has provided some effective ways of resisting the onslaught of the psychiatric lobby and those that collude with them. What have the MEA and AfME actually done this year to even compare with the advocacy work of One Click? It is a fair question, however discomfiting to some.
So I am calling on the MEA, and AfME, and their apologists to stop Jane- baiting, and actually do something positive for the ME/CFS community, something that shows you might be serious about advocating for our rights. Your report card says 'could do much better'. WHAT are your strategies? Tell us exactly HOW you intend to ensure the NICE guidelines do not become a travesty of justice for ME/CFS sufferers. Tell us HOW you intend to stop all collusion with the psychiatric lobby to enforce dangerous treatments such as CBT/GET. Tell us HOW you are going to promote and engage with the Canadian Guidelines. Tell us HOW you are going to ensure the methodological, theoretical and ethical flaws of the PACE and FINE trials are highlighted at the highest level. Tell us exactly HOW you are going to ensure the WHO neurological classification remains stable. Tell us HOW you intend to ensure the MRC committs itself to funding biomedical research into the causes and treatments for ME/CFS.
And if you won't rise to the challenge, then expect the consequences: the certain loss of the respect of the ME/CFS community, possibly the end of your charities. ME sufferers may get brain fogged, exhausted, but they're not stupid.
To the community, I would ask each of you to consider: are you prepared to let the psychiatric lobby continue with what they are doing? Do you want the charities who claim to be representing you to collude with them? Are you prepared to continue to be told your illness is mental, and have CBT/GET forced upon you? If you're not, what do YOU think should be done to prevent this? What are YOU prepared to continue to do to prevent this?
Angela Kennedy
P.S. Any attempt at Angela-baiting will only reinforce the fears many right-thinking people in the community already have, that shooting the messenger is a displacement tactic, and will not deflect from the seriousness of the situation facing both AfME and the MEA. Plus, I will make it public.

From Charles Shepherd:

"The actions that Ms Bryant is/has been taking - detailed complaints to the Department of Trade and Industry, Charities Commission, and Department of Health; demands to have names and addresses of all current MEA members sent to her etc - are all designed to either severely disrupt our normal working timetable or bring about the collapse of the MEA. These are then combined with all kinds of unfounded personal attacks which people have great difficulty in making her retract - even when they are completely untrue (as I know from personal experience on several occasions).

I know that people have disagreements with some of the policies that the MEA have adopted either now or in the past - and this is perfectly understandable when dealing with a complex medical condition such as this. But is the way that Ms Bryant carries out her relentless and at times quite offensive internet campaign against certain individuals an acceptable way to deal with such disputes?

And would you find it acceptable if you were to become one of her targets?

Charles Shepherd
MEA trustee"



ME International

Posted at 10.7.04 by fnqsupport
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Monday, May 03, 2004
Reply to Lord Puttnam/AfME

From: Dr John H Greensmith
To: Scotsman
Sent: Thursday, April 29, 2004 9:20 AM
Subject: Re: Film Chief Blames over-work for Health Plight by Anita Singh (Scotsman, 27 April 2004)
Scotsman letters. Cc: Anita Singh, Showbusiness Editor; Lord David Puttnam.

There are many more celebrities and famous people, like Lord David Puttnam, with M.E. (Film Chief Blames over-work for Health Plight, Scotsman, 27 April 2004 ), than will publicly admit to it, for fear of affecting employment opportunities. Indeed, he has already had a glittering career and is well established for more success before he does so.

This secrecy distorts both the total statistics and the mix of types of people with M.E., which may affect public knowledge & awareness and, in turn, funding for research. (Incidentally, yuppie flu was never an accurate term because M.E. does not affect "mostly middle-class achievers" but both sexes, all ages and social classes, worldwide).

On the one hand, ordinary folk with M.E. will be pleased to hear David Puttnam air some of the familiar problems they can face: overwhelming exhaustion and muscle pain beyond the mere tiredness of other chronic fatigue states; ignorance, disbelief and derision from doctors and the general public; the isolation it brings.

On the other hand, they will be concerned at his overemphasis on psychological factors as the cause and recommendation of treatments intended for psychiatric illnesses.

David Puttnam may have had a busy life (as many other M.E. sufferers, but by no means all, have had) but it is questionable whether his (or their) life was so stressful that they couldn't cope and, further, that it caused M.E. David says he has depression but feeling justifiably fed up about loss of employment (or schooling for children), reduction in standard of living, isolation and fractured relationships, on top of the debilitating symptoms of M.E. is not the same as clinical depression, which may occur with no such causes, nor should it be treated in the same way.

Wealth, that comes with fame, may buy some comfort, even anonymity because there is no need to apply for benefits but it cannot buy a cure that does not, as yet, exist.

Ironically, after five years of cognitive behaviour therapy, supposed to help patients manage their illness more positively, David is still ill and now has the negative and erroneous view that it is, somehow, his fault.

Since the latest research, published to coincide with M.E. Awareness Day on 12th May, from the Troon-based 25% Group*, which represents the most severely affected people with M.E., shows that over 90% found the two most recommended treatments, cognitive behaviour therapy and graded exercise, at least unhelpful and a shocking 82% reported their condition worse after graded exercise treatment, it would seem prudent to have no treatment at all, other than rest, than one that does harm, pending further research into the more promising physiological and neurological causes of this illness.

Yours sincerely
Dr John H. Greensmith
drjohnh@greensmith53.freeserve.co.uk
Dr John H Greensmith
36a North Street Downend

Also see The Guardian and a reply to that article ME Support

ME International

Posted at 3.5.04 by fnqsupport
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Saturday, May 01, 2004
Lord Puttnam and AfME



There are a number of concerns raised by the David Puttnam interview in
today's Guardian Newspaper:

Lord Puttnam made a number of comments which may actually cause further
problems in how ME/CFS is perceived by the wider community. His most
worrying comment was regarding his apparent advocacy of 'cognitive therapy'
(which I presume is actually Cognitive Behavioural Therapy), in which he
states:
"It helped me understand the illness, but also the way in which I may have
been partially responsible for creating it."
Here Lord Puttnam appears to be advocating Cognitive Behavioural Therapy,
but, most appallingly, also blaming himself (at least partially) for an
organic neurological disease, which he himself acknowledges may be caused by
a virus. By association, here he is generalising his own, self-blaming
beliefs to all victims of ME/CFS. Later in the article he goes on to
describe himself as 'earnest and busy', and these qualities are linked to
his ME/CFS.
This is particularly unfortunate, as ME is known to afflict people of all
social classes, personalities, and abilities, whether driven, lazy or any of
the spectrum of character traits in the human species, despite the various,
furious and spurious attempts by the psychiatric lobby to discursively
construct an "ME personality".
This was primarily a highly personalised account of his own illness, by a
prominent personality who enjoys a high status and privilege. While Lord
Puttnam's status and privilege is not a point of criticism, what is of deep
concern was the lack of any political context of the disease of ME/CFS
within this article, even though Lord Puttnam is seen to be a person with
political interests (his concern for the 'kids of Wearside', for example,
documented in his interview.) The fact that Lord Puttnam is a patron of the
charity Action for ME, and had consented to be interviewed ONLY at their
request, makes the lack of political context in this interview particularly
remarkable.
Lord Puttnam has been made fully aware of the wide range of concerns about
the charity Action for ME, as detailed in the AFME Dossier:

Yet, to date, Lord Puttnam has chosen not to respond in any way to these
concerns.
My concerns are that Lord Puttnam appears, at best, completely unaware of
the serious political issues and social and material inequalities affecting
ME sufferers, and without political commitment to eradicating the injustices
affecting fellow sufferers. I am particularly worried that he appears, from
this interview, to buy into the psycho-social approach favoured by the
psychiatric lobby. Lord Puttnam may actually believe in a 'holistic'
approach to the illness, but he appears, astoundingly, to have a political
naiveté about the appalling distortion of the holistic approach to health
which has been wreaked by the psychiatric lobby in their endeavours to deny
the physical realities of ME/CFS, and culturally construct sufferers as
deviants instead.
It is not enough to 'raise awareness' of the disease, if the wrong
impressions about the disease are being given. Lord Puttnam's interview
today has given the wider community 'the wrong impression'. The specific
charities who continue to allow this 'wrong impression' to be given will
have to answer for this to the ME community.
Angela Kennedy
The ONECLICK Group

ME International

Posted at 1.5.04 by fnqsupport
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Saturday, April 24, 2004
Myalgic Encephalomyelitis

Subject: ME in Westminster

Source: UK House of Lords Date:
April 20, 2004
URL: http://www.publications.parliament.uk/pa/ld199697/ldhansrd/pdvn/lds04/text/40420w03.htm

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

--------------------------------------------------

The Countess of Mar asked Her Majesty's Government:

Whether, in the light of their clarification that myalgic encephalomyelitis/ chronic fatigue syndrome is a neurological disease and not a psychiatric disorder, they will forward this information to the chief executives of all National Health Service healthcare trusts, to primary care trusts and to social services departments; and whether they will issue a press release to inform the general public and the media about the correct classification of the syndrome; and[HL2302]

What steps they have taken to inform the Presidents of the Royal College of Psychiatrists and the Royal College of Paediatricians and Child Health that those of their documents which describe chronic fatigue syndrome as a mental health disorder or list the syndrome under the heading "Support for children with mental problems" are not in accord with the Government's confirmation that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease.[HL2303]


Lord Warner:

The Department of Health did not say that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease. What we did, with the help of the World Health Organisation and WHO Collaborating Centre, was clear up some confusion around terminology in the second edition of the WHO Guide to Mental Health and Neurology in Primary Care.

In our present state of knowledge, chronic fatigue syndrome remains medically unexplained with various associated risk factors, and with variable symptoms, including some neurological, cardiovascular, digestive and psychological symptoms.

Our policy remains as stated in the Government response to the Independent Working Group's report in 2002. Myalgic encephalomyelitis/chronic fatigue syndrome is a debilitating and distressing condition affecting many people. It is a chronic illness and health and social care professionals should manage it as such.

The Royal College of Psychiatrists and the Royal College of Paediatricians and Child Health are independent organisations and the Department of Health is not involved in the publication of their documents. Questions on the content of their publications need to be taken up with the organisations and authors involved.

--------(c) 2004 Parliamentary copyright

___________________________________________________________________________________
As seen above the offering of Lord Warner who seems to have - once again - got his venerable knickers in a nasty knot. As I am sure that readers will recall, Lord Warner is the Health Minister who had to apologise in public for having misled the government over the mal classification of ME/CFS.

Please see Lord Warner's public apology here:
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0402B&L=co-cure&P=R3109#

In his latest statement Lord Warner says above:

"The Department of Health did not say that myalgic encephalomyelitis/chronic fatigue syndrome is a neurological disease. What we did, with the help of the World Health Organisation and WHO Collaborating Centre, was clear up some confusion around terminology in the second edition of the WHO Guide to Mental Health and Neurology in Primary Care."

Er...hello….. Lord Warner? Earth to language semantics sleight of hand calling.....

The WHO recognises that ME/CFS is a neurological disease and classified as such under ICD.10 G93.3. Lord Warner confirms that the UK government accepts this classification and terminology.

Q. So how can Lord Warner recognise and accept the WHO classification and terminology of ME/CFS ICD.10 G93.3 as a neurological disease and yet at the same time seem to reject it when this is the classification and terminology that his government adopts?

A. With great difficulty.

Let's get this straight if we may. ME/CFS is a neurological disease as classified by the WHO under ICD.10 G93.3. The UK government accepts this classification. No matter how much wriggling goes on by Lord Warner, the psychiatric lobby and selected of the ME/CFS charities - namely Action for ME and the Myalgic Encephalopathy Association - this is the fact of the matter.

That's politics and vested interests in action for you. Time and again. Language semantics applied to the very ill. Disgraceful.

Jane Bryant
2004-04-23
THE ONE CLICK GROUP

ME International


Posted at 24.4.04 by fnqsupport
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