Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research by Professor Hooper 2006
‘Undoubtedly the perverse use of chronic fatigue syndrome, to impose a psychiatric definition for ME/CFS by allying it to fatigue syndromes, has delayed research, the discovery of effective treatment(s), and care and support for those suffering from this illness
I would propose that the use of CFS should now be abandoned and that, following the Minister of Health’s assurances, the WHO definition is now accepted and used in all official documentations. The excellent work on the biological aspects of ME, already carried out by several leading research groups, now requires significant funding.’
ME Exists: True or False? by Eileen Marshall and Margaret Williams,18th August 2006
It seems that the powerful vested interests groups who now control the Establishment will tolerate no opposition, with the result that NHS doctors' freedom to practice medicine is increasingly proscribed.
With no hope of funding to establish a diagnostic test and with no will by the Royal Colleges or Government to formulate or accept an accurate case definition, the situation relating to ME/CFS in the UK cannot improve.
So many abnormalities have now been shown to occur regularly in cases of authentic ME/CFS that it is not only bad science to attempt to dismiss, ignore or deny a reality that can be scientifically measured, but to continue to do so must, as others have noted, border on the criminal.
CBT in ME/CFS - More Information by Eileen Marshall and Margaret Williams, 23rd August 2006
In our document "ME Exists: True or False?" we drew attention to recognised abnormalities in ME/CFS, one of which being the significant loss of grey matter in the brain with irreversible loss of grey cells, especially in Brodmann's area 9, and mentioned that this may indicate major trauma to the brain.
If such trauma to the brain exists in ME/CFS, then the chance of cognitive behavioural therapy (CBT) being effective in ME/CFS is probably zero and the MRC PACE trials may be a disaster for the psychiatric lobby.
Circulating Blood Volume in Chronic Fatigue Syndrome David H. P. Streeten, MB, DPhil, FRCP, FACP David S. Bell, MD, FAAP
‘ Of the 19 patients reported here, abnormalities in blood volume were very common. The most common, found in 16 of 19 patients, was a reduction in red blood cell mass. Eleven subjects had low plasma volumes, and total circulating blood volume was subnormal in 12 of 19 subjects. In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value (21). In general, blood pressure measurements were not predictive of the results of circulating blood volume measurements.’
ARE MPs ASKING THE RIGHT QUESTIONS? By Campaigning for Research into Myalgic Encephalomyelitis: RiME
In May you asked the Secretary of State for Health a question about the new NHS 'CFS/ME' centres which are being developed in England. It would appear from that you are working from the assumption that people with ME welcome the centres. We beg to differ. Please read the enclosed information from our last two newsletters. As you will see, people (including health professionals) from Kent, Hants, Birmingham, Shrops, London and Manchester are either opposed to the centres or have serious concerns. We have received further complaints from other areas.
The pivotal issue in all of this is nomenclature. The Govt has both cleverly and deliberately fudged a neuro-immune-vascular disease (ME) with Chronic Fatigue and loosely defined CFS. I enclose information which contrasts the Canadian Criteria, which our supporters recognise, to the Oxford and Fukuda Criteria, which they don't. It would appear that some centres will be admitting using the Fukuda or a version of it.
People with ME deem these centres not only to be unhelpful, but to be working against their interests. Imprecise admittance criteria will produce skewed results which (1) might be used as a further excuse by the Govt for not researching the underlying physical causes of ME (the Govt, shamefully, has not invested a single penny in this area) (2) lead to a situation where peolpe with ME's benefits are linked to them attending the 'mental rehab centres'.
To the news that the funding for the centres might run out; well, many with ME are saying 'hooray!'.
There’s no smoke without fire! Some comments on the tendency to relapse in ME by Dr Elizabeth Dowsett
‘ME commonly follows a virus infection, which, at first, appears to be trivial. However, the illness soon becomes distinguishable from other forms of post viral debility (including that associated with influenza) because of its prolonged course and tendency to relapse, making it inadvisable for sufferers to return to school, college or work without adequate convalescence. In a society which rates speed, sport and entertainment so highly, slowing down to rest will be unpopular and most young people will need some persuasion. The commonest causes of such a reverse in ME appear to be mental and physical over exertion.’
Submission To The Parliamentary Inquiry Into Progress In The Scientific Research Of M.E. By The 25% ME Group (Word format)
"It seems we are constantly having to fight on different fronts concerning how ME sufferers are treated when it comes to the medical profession or the benefits agency" writes Simon Lawrence in the (Winter 2005) Newsletter of the 25% Group.
The truth is that those with ME can be so ill and not get better; they can be so ill, not just for a few weeks, but for years on end, for decades even, without remit, without any relief, while psychiatric research accrues every single penny of Government funding for itself in a fruitless attempt to research and implement an inappropriate, harmful behavioural and exercise regime:
Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease – madness! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful.
Sufferers are far too ill to protest, and too ill to ever undergo the so called behavioural remedies being developed in their name, but will never successfully treat anyone with real ME, as one sufferer explains:
"I have been ill in different phases for 15 years. I have worked it out for myself that you can only "exercise" within very narrow limits. It is simply not the case that you can exercise your way out of this illness. If it were that simple most people with ME who were previously very fit and active, would have long since recovered."
For more see: http://www.25megroup.org/Campaigning/Gibson%20Parliamentry%20Inquiry/Gibson%20Inquiry.htm
ME/CFS Politics in a Nutshell (UK) by Kevin Short
‘Ever mindful of budgets, In the UK, Government Ministers have been captured by the psychologising views of the Wessely School, Insurance Industry and the DWP 4 and are pursuing their ‘Pathways to Work’ project - which is set to gain momentum from 2005. A situation where sufferers of a physical neuro-immunological disease (M.E.) will be routinely referred to psychiatrists as mental health patients – and subject to harmful ‘treatment’5 upon pain of benefits withdrawal – is being set up. This is NOT exaggeration.
In spite of all the biomedical evidence to the contrary, these vested-interest psychologisers continuously maintain their anti-science mantra: that ‘M.E. is perpetuated by mistaken belief and sick-role behaviour’. Their well-funded lobby machine relentlessly bombards parliament and the media with disinformation - and they flood medical and trade journals with extremely low quality psychiatric ‘research’ papers.7 Inevitably, all of this adversely affects the views of time-pressed GPs who are simply too busy to read all the bio-medical research papers themselves.’
ME/CFS Post-Exertional Malaise and Exercise by Marjorie van de Sande B.Ed, Grad. Dip. Ed.
Even though post-exertional malaise is a hallmark feature of ME/CFS, exercise programs are often prescribed with little thought to the effect they may have on patients. As much care must be taken in prescribing appropriate exercise for ME/CFS patients as in prescribing pharmaceuticals.(5)
|
Response to Exercise |
Healthy People |
ME/CFS Patients |
|
Sense of well-being |
Invigorating, anti-depressant effect |
Malaise, fatigue, worsening of symptoms* |
|
Resting heart rate |
Normal |
Elevated |
|
Heart rate at maximum workload |
Elevated |
Reduced heart rate |
|
Maximum oxygen uptake |
Elevated |
Approximately ½ of sedentary controls |
|
Age-predicted target heart rate |
Can achieve it |
Can NOT achieve it |
|
Heart functioning |
Increased |
Sub-optimal |
|
Cerebral blood flow |
Increased |
Decreased |
|
Body temperature |
Increased |
Decreased |
|
Respiration |
Increased |
Decreased |
|
Cognitive processing |
Normal, more alert |
Impaired |
|
Oxygen delivery to the muscles |
Increased |
Reduced |
|
Gait Kinematics |
Normal |
Abnormalities |
|
Recovery period |
Short |
Days or weeks* |
[*Note that recovery may be incomplete in some patients even after 'days or weeks' as this chart states; symptom exacerbation or disease progression may in fact persist for many months or years following exertion, or may be irreversible. The symptoms induced by exercise also bear little relation to mere ‘malaise’ or ‘fatigue’]
Chronic Fatigue Syndrome May Be An Infectious Cardiomyopathy Of Single Or Multiple Viral Etiology by Maryann Spurgin, Ph.D.
The most acutely perceptive and pioneering work on CFS these days is happening in a quiet corner of the country, out of the CFS limelight. The work is being conducted by A. Martin Lerner, M.D., an infectious-disease specialist at Wayne State University, along with his colleagues in cardiology. The basic thesis of their well-documented research is that CFS is an infectious cardiomyopathy of single or multiple viral etiology -- a cardiomyopathy that in many cases is progressive and degenerative. According to the theory, CFS results when an initial infection with a virus, or a reactivation of a latent virus -- for example, EBV or CMV -- attacks cardiac tissue, producing exercise intolerance, the hallmark of CFS. The human cardiac myofiber becomes the site of persistent viral infection. The infection flares up when the infected person physically exerts him or herself.
In a normal subject, an ejection fraction will rise during exercise. They note that a stationary or falling ejection fraction is abnormal. Their work cites studies showing that declining ejection fractions are not seen in normal persons leading a sedentary life. Deconditioning and a sedentary lifestyle in normal subjects are not causes of decreasing or falling left ventricular ejection fractions.
80% of an AfME survey said the clinics were a good thing by Stephen Ralph
In sticking up for Professor Pinching and the "CFS/ME" "Fatigue" Clinics the correspondent cites a recent survey where 80% of attendees state that they were satisfied with the service provided to them.
And in the next breath the correspondent states.... this survey was published in (no less than) InterAction - the publication of Action for ME who as we know are bank-rolled by the Department of Health who have given them hundreds of thousands of pounds in grants to set up these clinics based on the AfME/Westcare model with the sole aim of dishing out mental health treatments and graded exercise and nothing more.
So my comment would be... well they would wouldn't they! Of course they do not mention that they themselves or indeed Action for ME do not represent the whole ME community by far and they do not say if those attending these clinics accurately represent in any way shape or form those people who have the specific signs and symptoms of ICD10-G93.3 Myalgic Encephalomyelitis.
The fact is that this 80% figure of individuals do not present to these "Fatigue" Clinics with the specific signs and symptoms of G93.3 Myalgic Encephalomyelitis.
The Australasian Report on CFS compiled critiques by Margaret Williams, 2001
Compiled by Margaret Williams on 2 December 2001 from various critiques posted on Co-Cure
In 1996 Dr Michael Wooldridge, Minister for Health and Family Services, approved an application to Medicare to provide funding of $130,000 to the Royal Australasian College of Physicians (RACP) to produce Guidelines on the most clinically relevant and cost effective methods of diagnosing and treating CFS.
The first draft report was released in December 1997 and was heavily criticised. The second draft was released in June 2001 (this four year delay achieved nothing). As in the UK CMO’s report, the guidelines focused on the (psychiatric) management of symptoms, not on discovering their cause. They ignore the substantial evidence of organic disease.
‘The failure to mention any of the evidence of physiological and neuropsychological deficits in CFS is disappointing in a document sponsored by an authoritative body who would presumably wish to present an accurate and unbiased view of current medical knowledge…..The authors could hardly be unaware of the repeated findings by unaffiliated groups of autonomic dysfunction (and) immune dysfunction in CFS…. In conclusion, this document...will ensure that most persons with CFS in Australia will continue to be inadequately treated.’
‘The RACP seems to suggest that cognitive behaviour therapy (CBT) provides a clear understanding of CFS. This claim is unfounded and lacks evidence…CBT is not a specific strategy for CFS where its claimed benefit is still questionable….no long-term study has established that graded exercise programmes can significantly improve aerobic capacity in CFS…..It appears that the RACP has failed to recognise that post-exertional malaise is a valid CFS symptom. There is no evidence that patients with CFS demonstrate avoidance behaviour to physical activity as claimed……the second paragraph of this section is a mixture of imagination and half-truths and should be entirely deleted. The UK experience of graded exercise in CFS has shown that as a single intervention, graded exercise was associated with the highest negative grading.’
The Late Effects of ME by Dr Elizabeth Dowsett
Possible costing for ME support has been based on 3 times the cost of maintenance for multiple sclerosis on the supposition that ME is 3 times as common[4]. The only costs that we can be sure of are those derived from the failure of appropriate management, and of inappropriate assessments which waste vast sums of money and medical time while allowing patients to deteriorate unnecessarily.[16]
Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]"
PACE TRIALS : The Background by K. Niven
The psychosocial model of ME is erroneous, illogical, and deeply offensive.
a.. It has caused misery and suffering to thousands of people with ME throughout Britain.
b.. It has stopped investigations into the illness, and thus hampered scientific progress towards a better understanding of the condition.
c.. It has led to children being refused home education, and sometimes even forcibly removed from homes, because their parents are suspected of making them ill (Munschausen's Syndrome by Proxy).
d.. It has led to wide-spread derision and abuse of children and adults with ME by medical personnel.
e.. Patients have often been denied a diagnosis, care and appropriate advice. In many cases, they have been given inappropriate advice or therapies - like GET and CBT - which made them worse.
There's More to the CDC's Conclusions About CFS Than Meets the Eye by Craig Maupin May 2006
Despite the spin about "biology", the three genes which Dr. William Reeves claims will direct future research and clinical care for CFS are primary to the biological footprint of post-traumatic stress disorder and anxiety. Reeves claims a recent study's outcome has alerted the Centers for Disease Control to the importance of stress response in the pathophysiology of CFS. In the study, abnormal expression of genes involving stress were uncovered in a broad array of research samples which included people with fatigue, CFS, and other unexplained conditions. And now, CDC researchers insist the study will change the way CFS is handled clinically by physicians, scientists, and insurers - very soon.
The CDC is well-positioned to enact this shift. At the moment, they possess a strong facade of flawed, yet "empirical", evidence. Reeves has also worked diligently to build strong financial and philosophical ties to advocacy leaders who are eager to assist his efforts. But more importantly, the CDC team is well-versed in the technical, yet gentle, terminology that can help move their ideas forward politically and socially. Terms like "biologically-based", "genetic predisposition", "homeostatic imbalance", "glucocorticoid receptors", and "allopathic load' assuage many CFS sufferers to a new post-traumatic stress disorder. Reeves made use of that knowledge on Thursday.
First, the CDC's Wichita CFS research subjects don't appear to be very disabled. At the press conference, Reeves touted the fact that 84 percent of the Wichita samples his staff had evaluated to have CFS didn't even know they had any illness, much less chronic fatigue syndrome. And according to a CDC study published in 2003, the average combined workload (employment and chores) of those diagnosed with CFS by the CDC's research definition was close to 48 hours per week. Apparently, these Wichita CFS sufferers, diagnosed by using the CDC's 1994 research definition, are running circles around many healthy people.
[For more on this topic see: My comments on the CDC's latest 'CFS' press release which also includes comments the latest Australian press release by Lloyd on post-glandular fever fatigue (which he calls ‘CFS’). For more information on Australian politics, see also: My comments about the current (worrying) state of Australian ME societies (These comments follow, and are relevant to, a recent book review.)]
A conflict of interests at the MRC by Stephen Ralph
As we all know here, the monies allocated by the MRC to the PACE and FINE trials have been handed to a select group of psychiatrists who themselves have and still do repeatedly claim to their own peer group audiences that "CFS/ME" is one in a group of Psychosomatoform Disorders or to put it another way.... a mental illness that causes multi-functional impairment that they claim can be treated and indeed cured using CBT and Graded Exercise Therapy.
This CBT/GET combination is being handed out to patients currently labelled with the heterogeneously labelled "CFS/ME" now referred to singularly as "this illness" at a string of mental health "Fatigue" clinics. To sweeten the pill, Action for ME has played a key part in deceiving the "CFS/ME" community by selling such treatments to patients claiming that "CFS/ME" is a real and distressing illness but at all times using language that does not emphasise the belief of mental health origin as claimed by the somatoform psychiatrists whom AfME are supporting at the very heart of the PACE and FINE trials.
It seems to me that the Medical Research Council has a clear conflict of interests in all this.
Response to the MRC Research Advisory Group (RAG) Draft Document for Public Consultation on "CFS/ME" Research Strategy dated 17th December 2002
M Hooper 1 EP Marshall 2 M Williams 2
Preface: On 14th January 2003 there is to be a meeting at The Royal Society of Medicine entitled "Chronic fatigue syndrome and factitious illness: interface between child psychiatric and paediatric services".
[According to the Concise English Dictionary (Bloomsbury 2001), "FACTITIOUS" means "contrived or insincere rather than genuine; not real or natural but artificial or invented"].
It is intolerably patronising to insist that CBT and graded exercise therapy should be the way forward in "CFS/ME" on the grounds that such interventions may help patients suffering from other "physical" disorders such as cancer to manage their situation better, whilst at the same time promoting and limiting research into "CFS/ME" to that designed to "strengthen" psychotherapy strategies rather than looking into underlying causes (as is the case in cancer).
The MRC "CFS/ME" Research Advisory Group seems not to agree that "Behavioural and rehabilitative strategies are fine as far as they go, but attention (and funding) must be focused on developing diagnostic tests and medical interventions to address the biological and physiological underpinnings of the illness" (36).
It is noted with particular regret that no-where in the MRC draft document is there any mention of the RiME petition (Research into ME): this petition carried over 16,000 signatures and it asked:
"That a panel of specialists in the fields of Neurology, Immunology, Endocrinology and other disciplines, but with the exception of Psychiatry, be established to commission research into the aetiology (underlying physical causes) of ME. That a research programme be up and running by the end of 2002".
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