The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

The CBT and GET database

  • Section 1: Introduction/Overview: Smoke and Mirrors
  • Section 2: Recommended background reading
  • Section 3: Research and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the scientifically unsupportable 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients
  • Section 4: A summary of the available medical research
  • Section 5: Patient accounts of CBT
  • Section 6: Patient accounts of GET
  • Section 7: Conclusion/Summary of key points (Includes Printer-friendly versions/Downloads, Acknowledgments and Future submissions sections)

Section 7: Summary of key points

This database may be summarised by the following key points:

1.     Despite popular opinion, there is in fact no evidence whatsoever which exists to show that Myalgic Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural problems; nor that therapies such as CBT or GET are appropriate, safe or useful in treating M.E. patients.

 

2.     The studies which support these theories and the use of these therapies have been conducted not on people with M.E. but instead on patients with an entirely unrelated health problem – the symptom of fatigue. The symptom of chronic fatigue and the distinct neurological illness M.E. each have a very different; cause, symptoms, aetiology, pathology (tests results), response to treatment, long and short term prognosis – and World Health Organization classification. People with the symptom of chronic fatigue (who merely qualify for a (mis)diagnosis of ‘CFS’) and those with M.E. do not represent the same patient group and cannot be studied interchangeably.

 

3.     The creation of many different definitions of what is now called ‘Chronic Fatigue Syndrome’ is how a particular group of psychiatrists (and others) have superficially ‘bridged the gap’ as it were between these unrelated patient groups so that they can fraudulently be discussed – to those who are not aware of the subterfuge involved – as if they were one and the same.

 

4.     Although the new name and accompanying definition were created in response to an outbreak of what was unmistakably M.E., this new criteria failed to select patients using any past or current research or lab work relevant to M.E., excluded the cardinal symptoms and signs of M.E. and instead focused almost entirely on ‘fatigued persons.’ There are now more than 9 different CFS definitions, none of which selects for patients with M.E. In the two most commonly used definitions the only essential symptom required for the diagnosis of CFS to be made is ‘chronic fatigue.’ Both of these definitions are also designed to expressly include those with psychological or psychiatric disease. All either of these definitions ‘define’ is a heterogeneous population of sufferers from misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue. The overwhelming majority of the research and articles available today which use the term CFS are not in any way concerned with, or relevant to, Myalgic Encephalomyelitis patients. (That minuscule percentage which has sopme relevance to M.E. is also virtually always severely contaminated with ‘CFS’ propaganda and so of doubtful credibility.)

 

5.     Why did M.E. suddenly need to be renamed or redefined? M.E. was ‘redefined’ not for medical reasons but for the benefit of a number of political and financial considerations. These are the reasons why the charade that M.E. could be a psychiatric disorder exists; not because there is good scientific evidence – or any evidence – for the theory, or because the evidence proving organic causes and effects is lacking; but purely because such a view is so financially and politically convenient and profitable on such a large scale to a number of extremely powerful corporations and Government departments.

 

6.     Wessely, and many other key members of the Wessely school (who claim that M.E. is a psychological problem of fatigue) have been shown to have a number of vested interests with regard to M.E. (including long-held ties with insurance, chemical and pharmaceutical companies). Despite this, and the fact the work produced by this group (and their counterparts worldwide) continues to be rigorously criticised on the grounds that it is methodologically flawed and biased and that it relies on a highly selective and misrepresentative choice of references, they have also driven governmental policy on M.E. in the UK (and worldwide) to an overwhelming extent. Wessely, Sharpe, Cleare and White (etc.) in the UK, their counterparts (and sometime collaborators) in the US; Reeves and Straus (etc. of the CDC), in Australia Lloyd and Hickie (etc.) and the clinicians of the Nijmegen group in the Netherlands each support a psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as CBT and GET as the most useful interventions for these patients. It is important to be aware that none of these groups is studying patients with M.E.

 

7.     As (bad) luck would have it, graded exercise programs are probably the single most inappropriate treatment that a M.E. sufferer could be recommended to undertake. Strong evidence exists to show that exercise can have extremely harmful effects on M.E. patients; permanent damage may be caused, as well as disease progression (and in some cases, death). For most M.E. patients CBT is useless and for a significant percentage it is harmful. CBT and GET are at best useless and at worst extremely harmful for M.E. patients. These treatments are also not always offered to M.E. patients on a voluntary basis; many have been treated as psychiatric patients against their will (or against the will of the parents of children with M.E.). In addition, many M.E. patients are ONLY offered ‘treatments’ such as CBT and GET – while access to even basic appropriate medical care is withheld.

 

8.     There is no legitimate scientific debate about whether or not M.E. is a ‘real’ illness or not, or whether or not it is ‘behavioural.’ Substantial evidence exists to show that it is simply not possible that somatisation, secondary gain, malingering, aberrent illness beliefs – or any or the other ridiculous and often contradictory ‘theories’ put forward by these vested interest groups – play a role in causing or perpetuating authentic M.E. The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ Strong evidence of the biological basis for the illness has existed since the 1950’s and more than 1000 good articles now support the basic premises of M.E. as a debilitating lifelong organic neurological illness (which affects virtually all bodily systems) and which can occur in epidemic and sporadic forms.

 

9.     The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes (etc). People with M.E. however are not the only patient group to be negatively affected by this politically-modified science.

It is common for patients with a variety of different illnesses with fatigue as a major symptom to be misdiagnosed as having ‘CFS.’ Lumping these disparate patient groups together under a vague and meaningless category of ‘fatiguing illnesses’ only hinders each of the patient groups involved in their battle to regain their health.

There are also a variety of negative impacts on doctors and the public (and others) caused by the ‘CFS’ insurance scam. For example, those doctors which recommend CBT or GET to their patients are leaving themselves open to being sued when (inevitably) a proportion of these patients (those with M.E.) are made sicker by these therapies, or being sued by the families of M.E. sufferers who die as a result of these inappropriate interventions.

The only groups which gain from this ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

 

10.   The disease category ‘CFS’ must be abandoned completely

Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. Patients with M.E. need this same opportunity. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group.

The name Myalgic Encephalomyelitis must be fully restored and the WHO classification of M.E. (as an organic neurological illness at G93.3) must be accepted and adhered to in all official documentations and government policy.

People with M.E. must immediately stop being treated as if they are mentally ill, or mixed in with various ‘fatigue’ sufferers in any way. All forms of GET, and the abusive form of CBT, must be banned for all M.E. patients. It is illogical and unethical that patients be routinely subjected to treatments which have virtually zero chance of providing any benefit and such a high risk of serious and long-term harm (or death). People with M.E. must also be given access to basic medical care, financial support and other appropriate services (including funding for legitimate M.E. research) on an equal level to what is available for those with comparable illnesses (eg. multiple sclerosis or Lupus).

 

Again, there is no denying that the facts about Myalgic Encephalomyelitis may well be quite inconvenient to any number of doctors, politicians, media, and members of the public who have been operating under false pretences for so long with regards to this illness, with everything that that entails. But inconvenient facts or not, it is facts that they remain.


Additional note: There is no doubt that these theories and therapies are inappropriate for, and do not apply to, M.E. patients. However, considering that (1) The government funded research produced by these groups continues to be rigorously criticised on the grounds that it is methodologically flawed and biased and that it relies on a highly selective and misrepresentative choice of references, and too often cites their own studies as the sole or primary references, and greatly exaggerates the level of benefit derived from CBT and GET on the fatigue patients they study. (2)This coterie of psychiatrists (and others) has a number of conflicts of interest and proven long-held affiliations with corporate industry – clinicians should also be very wary about accepting that the claims made by these groups are legitimate and based on objective analysis of the evidence with regard to true ‘chronic fatigue’ sufferers either.

The evidence supporting the beneficial effects of CBT and GET in these patients is as best flimsy, as many of the compelling articles and evidence provided in Section 3 of this guide made very clear. Treatment and aetiology for every illness (or symptom) must be determined solely by legitimate science conducted by groups which do not have a direct conflict of interest in any particular outcome.

Downloads

Right-click on a file link to save a copy of the file to your computer

Left-click on a file link to open the file to view (and then print and/or save the file if you wish by clicking on 'File' and then 'print' or 'save as')

 

A CBT/GET Warning Letter

This letter is for M.E. patients that have tried everything to avoid being forced to participate in CBT or GET programs against their will. It may help to send those who are recommending and/or going to be administering the program/s a warning letter such as this one. This letter firmly informs those involved of the scientific facts, and warns them that you or your family will sue if you are harmed or killed by these unethical and unscientific interventions.

This letter (including the summary of the ability scale) can be downloaded in a printer friendly Word or PDF format

 

Smoke and Mirrors 

This fully referenced paper looks at the lack of evidence (and financial and political motivations) behind the 'behavioural' model of M.E. and the use of interventions such as CBT and GET, the physical effects of CBT and GET on patients with M.E., and outlines a strategy for the resolution of the confusion caused by the 'CFS' disease category. This text forms the introduction to the CBT and GET database.

The full-length 12 page version of this text can be downloaded in a printer friendly Word, PDF or large-print PDF format

 

The CBT and GET database 

This paper is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of these interventions. 

View/Print/Save the full-length 173 page version of this text in Word or PDF format

View/Print/Save the condensed 41 page version of this text in Word or PDF format

 

The effects of CBT and GET on patients with M.E.

No evidence exists to show that CBT or GET are appropriate, safe or useful for patients with M.E. So what effect do these interventions have on M.E. patients medically? Most importantly, are they safe for people with M.E.? This paper looks at the physical effects of CBT (psychotherapy) and GET (exercise) on patients with M.E.

Save the full-length 12 page version of this text in Word, PDF or large-print PDF format

Save the condensed 5 page version of this text in Word, PDF or large-print PDF format

Acknowledgments

When I put out the call to be sent articles relevant to this project, the following people were kind enough to respond and I would like to send a big thank you to you all; Louise Ellis, Simon Lawrence of 25% ME Group, Orla Ni Chomhrai, Judy Roget, Jonathan Wilson, Susanna Agardy and (most especially) Rosemary Smith (who sent me at least a dozen articles!).

Thank you also to all those who, often at significant cost to themselves, sent me their (or their child’s) stories about how they had been affected by CBT and GET. I know that some of these personal accounts were written with great difficulty, and at the cost of significant relapse. It is to be hoped that your sacrifices will help save future sufferers from both being so severely affected in the first place, and from having such distressing stories to tell.

Future submissions

Further relevant articles, and patient accounts of CBT and GET may still be submitted by email or through the HFME Guestbook.

If you would like to submit your own, or your child's, M.E. story to possibly be included on the 'Case Studies' page, submit it by email 

(Please allow at least 2 – 6 weeks for your article/account to appear.)

The M.E. community is also invited to submit any constructive criticism that might improve this database in any way.

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Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95