Add as bookmark

What Can We Expect from the Current Review of NICE Guideline CG53

by Nancy Blake(more info)

listed in cfs me, originally published in issue 248 - August 2018

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007)?[1]

 

To frame the discussion, here are a couple of quotes from ‘On Bullshit’, [2] by the moral philosopher, Princeton Professor Emeritus Harry G. Frankfurt:

Since bullshit need not be false, it differs from lies in its misrepresentational intent.  The bullshitter may not deceive us, or even intend to do so, either about the facts or about what he takes the facts to be.  What he does necessarily attempt to deceive us about is his enterprise.  His only indispensably distinctive characteristic is that in a certain way he misrepresents what he is up to.   [2,p 54]

On ‘bullshitting one’s way through’....’this involves not merely producing one instance of bullshit; it involves a program of producing bullshit to whatever extend the circumstances require’ [2,p 51]    

 And, from the NICE website, on What We Do:

NICE’S role is to improve outcomes for people using the NHS and other public health and social care services’[3]

 

Preamble

  • Cultural, political and economic factors create pressure to keep ME/CFS classified as a mental health disorder.
  • Anything written about ME/CFS can attract immediate skepticism, because the facts about ME/CFS, especially severe and very severe forms, are so extreme that meticulous accuracy sounds like the wildest hyperbole. [4]

Whitney Dafoe

Whitney Dafoe, World Traveller/Photographer now with Severe ME’, courtesy of the Open Medicine Foundation

 

Introduction

The core issue is perfectly straightforward:  Is ME/CFS (by whatever name, an issue in itself), a psychiatric condition, appropriately treated as such, or is it a medical disease appropriately treated as such? 

There is an ongoing power struggle between a group of psychiatrists and related professionals who have an interest in keeping ME/CFS within the remit of psychiatry, and ME/CFS researchers, clinicians, patients and advocates who want this illness to be accepted as a medical condition and for the guidelines to reflect this.

The current guidelines are based on the biopsychosocial (BPS) model of ME/CFS, which holds that this disorder, while often preceded by a viral illness, is perpetuated by the patient’s ‘false beliefs’ that he has a serious medical condition which is made worse by exercise.  The overall aim of treatment is to increase the patient’s activity.  This is done by providing Cognitive Behaviour Therapy, to change the ‘false beliefs’, and Graded Exercise Therapy, structured to find a patient’s baseline of activity and then gradually to increase it.   [5.6]

The objections to this from patients are that ME/CFS is a serious medical condition and it is made worse by exercise.  CBT is therefore irrelevant, and GET is potentially damaging.  The guidelines should be developed by clinicians and researchers who treat and study ME/CFS from a medical perspective.  The overall aim of treatment should be to cure the disease.

The Guideline Process

The National Institute for Health and Care Excellence Surveillance report 2017 - Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53, Surveillance decision, last updated September 20, 2017 [1],  promises ‘a full update with a modified scope of the guideline CG53’. [1] This is the review which is the subject of this article.  I hope to continue to follow the progress of the process in subsequent articles between now and September 2020, when the revised guideline is to be published.

This report provides links to the reason for the decision, summaries of evidence presented by stakeholder consultations, new evidence, stakeholders comments, and further information about the process involved in developing guidelines, all of which shed light on the benefits and shortcomings of the review process, and allow the reader to make certain predictions about what is likely to happen, and what would have to happen in order for real change to take place.

 

Linda Pryke Before and After Years of Suffering from ME-CFS .jpg]

Lynne Pryke Before and After Years of Suffering from ME-CFS. Images thanks to Lynne Pryke, Twitter @LcPryke.

The Guideline Committee have invited patients "from the whole spectrum of severity" to become Lay Members.  Full-day meetings in Central London, several weeks apart, work to do in between, over two years.  Severely ill Lynne responds. "I’d love to help out, but my screaming in pain, fatigue and being unable to speak might be a distraction...".  Actor and author Lynne, bedbound, in excruciating pain for for years, proves that severe ME doesn’t destroy courage and a sense of humour. 

The most noticeable feature is how the BPS model, its proponents, its practitioners, and its assumptions about ME/CFS is tightly embedded within every aspect of the process, reflecting the power this model exerts across the whole UK establishment, from research funding to media perception.

History

From 1955 until 1970, this illness had been treated as an infectious disease.  It was brought to public attention in the UK in 1955, when there was an outbreak at the Royal Free Hospital in London.  It affected mainly hospital staff, especially nurses, and the hospital had to be closed for a period.  Dr Melvin Ramsay, the infectious diseases consultant, supervised treatment, kept records, and remained concerned with it up to his death in 1989. [7]   In 1970, he acceded to a request to study his notes about the outbreak by a psychiatrist completing his Oxford Ph.D.  The resulting paper proposed that the illness was nothing more than ‘mass hysteria’, supported by the fact that most of the patients had been women. [8] This view was presented to the general public in a short article in TIME, [9] then the most influential journal in the English language, and became widely accepted.

Hysteria is a Freudian concept:  The patient’s repressed emotional conflicts are ‘converted’ into physical symptoms. [10]  Diseases once labelled as ‘hysterical’, ‘conversion disorders’ or ‘psychosomatic’ include asthma, duodenal ulcers, and multiple sclerosis.  Even polio was once regarded as hysteria. Now medically understood, these illnesses are no longer treated by psychiatrists.

Powerful psychiatrists in the UK have been able to prevent ME/CFS from making this transition.  From 1970 onward, the Freudian concept of hysteria, under various labels (somatoform disorder, conversion disorder, functional neurological disorder, bodily distress disorder, medically unexplained symptoms ), has dominated medical, political and cultural treatment of this disease.  Sociological theories regarding ‘sickness behaviour’ have contributed to this view, now called the ‘biopsychosocial’ (BPS) model.  (A thorough discussion of the nature and implications of the BPS model can be found in Keith Geraghty’s article Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm? [11])

After the hysteria concept was generally accepted, funding for medical research into this disease dried up.  [7]  This has continued, both in the US and in the UK, where research funding has largely been confined to studies of treatments based on the BPS model. 

The development of treatment guidelines moved into the hands of psychiatrists, [12] in the face of opposition from clinicians, researchers and patients who insist that this is a disease which needs to be understood and treated in terms of physiological causes and effects, and this conflict continues today. [13,14]

Implications

If the BPS model is retained: 

  • Patients will continue to be offered treatments which harm them, pushing many from moderate ME/CFS into severe ME, permanent incapacity and intractable pain, which can continue for decades.  [4,19]  Although the current Guidelines emphasise that patients have choice, and may refuse any aspect of treatment without prejudice to other treatment, medical insurers and the DWP can refuse benefits unless the patient has followed a full course of recommended treatment.  This presents patients with the choice of making themselves permanently disabled or dropping out of treatment to protect their health, if their deteriorating condition has not already made it impossible to continue to the treatment program.
  • For the professionals who support it, maintaining the BPS model is central to  reputations, academic positions, and income.  At the highest level, it involves national and international influence and status, as well as income derived from academic positions and consultancy fees.
  • Major medical insurers and government agencies concerned with disability allowances value the services of psychiatrists who can keep ME/CFS within the remit of psychiatry.   Disability payments for psychiatric conditions can be time-limited, while if the disability is acknowledged as physical, payments are for life.  People who have ME/CFS are incapacitated from the beginning, and for most, the disease becomes chronic and long-term.  The illness is increasingly wide-spread, and thus becomes a real financial threat to these institutions.   Psychiatrists who can be counted on to keep this illness within the psychiatric remit are therefore a valuable commodity to these agencies, no doubt well remunerated. 
  • The advantage of the psychiatric remit is that it includes the promise of recovery to patients who engage in CBT and GET, thereby justifying insistence that benefits will be withheld unless the patient has completed a course of these ‘evidence-based’ treatments.  Clearly validation by NICE would make the case pretty impregnable.
  • Additionally, the provision of NHS-wide services based on this model, as set out in the Guidelines for Joint Commissioners of services for patients with medically unexplained symptoms [15 ], would direct millions of mental health funding into services which would employ large numbers of NHS staff.  If the current specialist services for ME/CFS based on the BPS model were disbanded, it would involve job losses, although staff involved might be employed in providing more effective services governed by the medical model.

If the biomedical model replaces it:

  • Patients, adults and children, would cease being offered, persuaded or even coerced into treatments that make them worse, so even without any further advance, all patients would have a much better chance of improvement or even recovery.
  • However, as explained above, removing ME/CFS from the psychiatric remit would involve catastrophic losses to those who have up to now, influenced or controlled every institutional response to this disease.  (This influence extends to the formation of the NICE Guidelines, the direction of research funding via the MRC, the medical, media and public perception of this disease via the Science Media Centre - which reports only on research developments within the BPS model, and not on medical research developments - and by having hastily cobbled together the CFS/ME Research Collaborative at a point when it seemed government funding might become available to medical researchers in the UK.[16])
  • The medical community and the wider public could benefit from access to accurate information about ME/CFS as reporting began to include medical developments.  Patients would benefit from a change in the public understanding of the disease.  Doctors who recognised the harms caused by Guidelines they are encouraged (on threat of GMC hearings! [footnote]) to follow, and who wish to try different treatment approaches would be free to do so.  In particular, if doctors could return to the early prescriptions of rest from the inception of this disease [17, 18], it would create the possibility of complete recovery, progress towards recovery, or at the very least, prevention of deterioration.

Footnote:  It is on record that doctors who have successfully used other approaches with their patients are often subject to official complaints to the GMC.  These complaints do not come from patients, they are instigated by individuals from the BPS group, and they often, but not always, fail.  Being successful with patients apparently doesn’t count, you have to follow the Guidelines.

The psychiatrists have assured medical insurers/government agencies that patients can make a full recovery if treated with CBT and GET.  This does not happen, and there is enough evidence from patients and patient surveys [19] to make it reasonable to assume that they know it does not happen.  It is reasonable to assume that the agencies also know that this does not happen. What it does provide is a means of denying financial assistance to people who need it.  All they have to do is make benefits provisional upon completing a course of the treatments recommended in the NICE Guidelines.  Patients are made worse by GET, and are unlikely to be able to complete the course.  With the BPS model, this failure can be blamed on the patient’s ‘resistance’, and benefits denied.  The PACE Trial (which has been thoroughly discredited [23]) and similar research projects provide the ‘evidence’ for these treatments.  The current Guideline Review proposes to consider only these ‘RCT’s, not any of the medical research, which, as in previous reviews, can be dismissed as ‘small laboratory studies’. 

It does not seem to have occurred to the medical insurers and the benefits agencies that the potential benefits of treating these patients with rest – recovery or improvement sufficient to permit the patient to change his status from beneficiary recipient to tax-payer – would save even more money than the current program of creating a population of permanently disabled paupers.  Whatever else may be said about the PACE Trial, no one came off benefits.

The Bullshit

  • If a disease is made worse by exercise, treat with exercise.  If patients object because it makes them worse, call this ‘exertion-avoidance’ and treat that. [20]
  • If a person with a mental health disorder has no history that could explain it, that doesn’t prove it isn’t a mental health disorder, it proves you can get a mental health disorder without any history to explain it.[21]
  • The ‘gold standard’ Random Controlled Double-Blind Trial is a way of testing the effects of a drug you are trialling against a placebo, without either the patients or the people giving out the treatment knowing which is which.  This can only be done if the drug and the placebo are absolutely identical (identical tablets, for example).  If what you are trialling is an activity (counselling, exercise, getting an information leaflet, or seeing a doctor) everyone knows what they are getting and what they are providing. 

This is therefore not a Random Controlled Double Blind Trial, or even a Random Controlled Trial. 

  • The current Guidelines are based on the BPS model, that patients are overanxious about mild symptoms, and will be made better through exercise.   The US IOM report [22] said that ME/CFS is ‘not psychogenic’, and is defined by the fact that exertion ‘may have adverse effects on many organ systems’.   The Guideline Review is still considering whether the IOM report  ‘may have any implications’.  (Evidently, none, other than removing psychiatry from further involvement, and CBT and GET from the treatment recommendations -  but they don’t seem to have noticed.)

How are they doing so far?

  • The only evidence being considered is from what they call Random Controlled Trials.  This allows them to eliminate all biomedical research as irrelevant.  This has limited them to 355 ‘relevant’ articles, while the IOM Committee consulted 9,000.
  • The PACE Trial has been discredited. [23]   
    • “The many wrongs committed by psychiatry and medicine to the ME/CFS community can only be righted when the Pace trial is ultimately seen for what it is: a disgraceful confidence trick to reduce patient compensation payments and benefits.” David Marks, Editor, Journal of Health Psychology
  • But the Review committee are still, via a new Cochrane Review, going to refer to it, and similarly designed studies as ‘evidence’.  They say that the results of a new research study must be taken into account.  This study is also similar to the PACE Trial, as well as adding a trademarked treatment which is similar to CBT/GET but potentially more harmful, and could make the holder of the trademark a very wealthy man if his treatment is recommended by NICE. [24  ]
  • The topic experts being used are very likely to be supporters of the BPS model, and the list of stakeholders is dominated by psychiatrically-oriented organisations and hospital foundations which are most likely to offer services based on the BPS model.  [Stakeholder list [1 ]
  • The CFS/ME Research Collaborative is likely to be considered a reliable source of information about medical research.  However, this was rather hastily assembled by the professional group who promote the BPS model at a time when it looked as though the government might be about to provide support for medical research, and it has been successful in diverting funds into projects aligned with their perspective and away from  genuine biomedical research. [15]
  • Patients have become very hopeful of political backing for real change especially after the Westminster Hall debate, but the overtly encouraging response given by Steve Brine  is somewhat undermined by his citing the CFS/ME Research Collaborative as a reliable authority on the subject.  [28 ] It appears from this that as usual, politicians have come within the sway of that tight circle of BPS influence, rather than being able to see beyond it.
  • There is little evidence, therefore, that the elaborate and complex set of activities involved in developing the revised Guideline is anything more than a public relations exercise designed to fill in the time until the final decision is made, and that that decision, however worded, will serve to maintain business as usual.
Ron Davis and his son Whitney
Whitney Dafoe with his father Ron Davis PhD, distinguished geneticist at Stanford University, and
Director of Open Medicine Foundation's Scientific Advisory Board, determined to solve ME/CFS. 
Dr Davis recently received a multi-million US$ NIH grant for this research.
https://www.omf.ngo/the-end-mecfs-project-2/

 

What would have to happen to create real change?

  • The implications of the IOM Report would have to be acted on:  psychiatrists, psychiatry, and the concepts based in psychiatry have no relevance to this disease, and should be removed from the Guideline development process.  These should be replaced by researchers and clinicians who treat ME/CFS as serious, disabling multisystem disease defined by the damaging effects of exertion, and guidelines should be based on the practice of physicians who take account of medical research developments in their treatment of their patients, and whose patients do get better.
  • There are a number of institutes at leading universities  in the US doing biomedical research:  Harvard, Cornell, Columbia, Stanford and others.  There is a medical research unit here at the UEA, funded by Invest in ME.  (Invest in ME holds annual international conferences on medical research into ME/CFS in London.  These conferences are never reported in the UK mainstream media.)  The results of their researches should now be drawn upon, to replace the so-called RCT’s exclusively used in the past. [25, 26, 27 ]
  • As explained above, this would be a challenge to a powerful group who are well entrenched in every area of public life in the UK – a challenge demanded by patients, but even if attempted, is probably doomed to failure.  The evidence so far is that the group involved in resisting any change to the Guidelines in the past are still in firm control.

The NICE Guideline Review purports to be about ‘improving outcomes’ for people who use NHS and other public services.

The current Guidelines recommend treatments for which there is evidence of harm, including permanent incapacity and intractable pain.  If a pharmaceutical product showed such potential side-effects, it would have been immediately withdrawn.  As long as the current Guidelines are in place, ME/CFS patients are endangered by using the NHS, as well as prevented from access to treatments which might be more helpful.  (It is notable that the current guidelines not only prescribe exercise, they recommend against the treatment found most important by the early doctors and by most patients:  complete rest.  The GET manual [6] repeats a statement about the danger of rest 17 times in the first few pages, and the theme continues throughout the manual.  Clearly, any doctor who recommended rest would be in danger of being brought before the GMC.)  The patients are told they have choices; but their doctors do not.

For psychiatrists and others involved in the current recommended practices, there are major professional, financial and reputational advantages in keeping the Guidelines as they are.   Are they in, or behind those in the organisational positions within NICE where the final decisions are made?

‘His only indispensably distinctive characteristic is that in a certain way he misrepresents what he is up to.’[2]             

The Guideline Review Process, with its byzantine layers of meetings, consultations, levels of power, and ultimate decision-making process, in which one person, or a small group, can simply decide to ignore what evidence they choose, on whatever grounds they choose looks a lot like what Frankfurt quotes as “bullshitting ones way through”

 ‘This involves not merely producing one instance of bullshit; it involves a program of producing bullshit to whatever extent the circumstances require.’ [2] 

Conclusion

It is unlikely that proponents of the biomedical model have enough political power to bring about any significant change in the revised Guideline.  But at least we will know what to call it.

References

1.         Surveillance report 2017 – Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53.                                 https://www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007--nice-guideline-cg53-4602203537/chapter/Surveillance-decision

2.         Frankfurt, H.G. On Bullshit, Princeton University Press, 2005, ISBN-13: 978-0-691-12294-6 (cloth)

3.         https://www.nice.org-uk/about/what-we-do

4.         Crowhurst, G. Severe ME, 2nd ed.; Stonebird. Research and detailed information re Severe ME. 2013.

5.         https://www.nice.org-uk/guidance/cg53

6.         GET Manual for the PACE Trial    http://www.burnout.nl/docs/Pace-GET-Graded-Exercise-Therapy-TrialManagementGroup-Stichting-Burnout.pdf      This document reiterates a warning about the dangers of resting seventeen times in the early pages.  This theme continues throughout, almost suggesting that it is resting that causes the symptoms. 

The following quote is an example of telling the patient whose symptoms are worsening that this is an inevitable part of getting better:  ‘A little known fact: A manageable stiffness and tiredness after exercise or activity is a positive sign that the body is adapting and strengthening. The body needs these mild to moderate 'stiff and/or tired’ signals for muscle fibres to develop and for the body to adapt positively. So.... If there is no physical response at all, there is no strengthening – if there is no strengthening, then the body is likely only to maintain strength or sometimes even lose it.’

7.         Ramsay, A.M. Myalgic Encephalomyelitis and Postviral Fatigue States, the Saga of Royal Free Disease.  Second. S.l.: The ME Association, 1988, Reprinted 2005.

8.         McEvedy, C.P. , Beard, A.W. Royal Free epidemic of 1955; a reconsideration. British Medical Journal1(5687):7-11. 3 January 1970

9.         TIME  Behavior: Mass Hysteria.  26 January 1970

10.       Freud, S. Fragment of an Analysis of a Case of Hysteria (Dora) Collected Papers, Vol. 1, Hogarth Press, 1949

11.       Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?  Keith J Geraghty and Aneez Esmail, Br J Gen Pract 2016; 66 (649): 437-438. DOI: https://doi.org/10.3399/bjgp16X686473

Abstract  In 1977 George Engel wrote about the need for an ‘integrated approach’ in medicine that moved the focus beyond biological mechanisms of disease to include all pertinent aspects of illness presentation, setting out a ‘biopsychosocial model’.1 Around the same time, McEvedy and Beard asserted that the disease ‘benign myalgic encephalomyelitis’, described by Ramsay at the Royal Free Hospital, London, was nothing more than a case of ‘mass hysteria’.2 In the 1980s, doctors combined theories of neurasthenia, hysteria, and somatoform illness, to reconstitute ME as ‘chronic fatigue syndrome’. Psychiatrists argued that CFS was best understood using a biopsychosocial (BPS) framework, being perhaps triggered by viral illness (biology), but maintained by certain personality traits (psychology) and social conditions (sociology).3 Although the BPS model holds much utility in understanding ‘illness’ in a wider context, many sufferers of CFS reject the notion that their illness is psychologically or socially derived. Significant numbers of patients report difficult interactions with doctors that leave them feeling dissatisfied, disbelieved, and distressed. In this article, we question whether or not the BPS model generates ‘harms’ for CFS patients, and we ask if other, alternative approaches might be more preferable to both patients and GPs.

12.       Members of the Committee. The Joint Report of the Royal Colleges of Physicians, Psychiatrists and General Practitioners on Chronic Fatigue Syndrome, October 1996 /CR54; Royal Commission; Royal College of Physicians, 1996.

13.       Colby, J. ME The New Plague; First and Best in Education Ltd.: Peterborough UK.  Polio connection, info and advice re children with ME. 1996.

14.       Carruthers, B. v. d. S. M. International Consensus Criteria for ME (Myalgic Encephalomyelitis). Journal of Internal Medicine. Recommends mmediate diagnosis, requires PENE (post exertional neuroimmune exhaustion) for diagnosis. 2011.

15.       Joint Commissioning Panel for Mental Health. Guidance for commissioners of services for people with medically unexplained symptoms, 9 February 2017. www.jcpmh.info/resource/guidance-commissioners-services-people-medically-unexplained-symptoms/

16.       The Young ME Sufferers Trust, Shining A Light On The CMRC Setup, August 2014, https://www.tymestrust.org/pdf/shiningalight.pdf

17.       Ramsay, A.M.  A Baffling Disease With A Tragic Aftermath, National Association for ME, 1986, http://www.name-us.org/Definitions Pages/DefRamsay.htm

18.       Acheson, A.D. The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland Disease and epidemic Neuromyasthenia, The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Byron Hyde MD and Jay Goldstein, Eds, The Nightingale Foundation, 1992.

19.       ME Association.  Conclusions and Recommendations from the MEA’S CBT, GET and Pacing Report, Published in 2013.  http://www.meassociation.org.uk/wp-content/uploads/CONCLUSIONS-MEA-REPORT-2013.\docx

20.       Nijs, J. et al, Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia: state of the art and implications for clinical practice. Clinical Rheumatology 3 May 2013. http://www.ncbi.nim.nih.gov/pubmet/23639990

21.       Stone J, Functional symptoms in neurology, Neurology in Practice, 2009.9:179-189. https://doi:10.1136/jnnp.2009.177204.  

22.       Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Beyond myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, Institute of Medicine, Washington, D.C.; The National Academies Press, 2015.  ISBN-13:978-0-309-31689-7          https://www.ncbi.nlm.nih.gov/pubmed/25695122

23.       Journal of Health Psychology, Special issue on the PACE Trial, Marks, David F,  31 July 2017, Editorial,  22:9:1103-1105 Article first published online: July 31, 2017; Issue published: August 1, 2017

https://doi.org/10.1177/1359105317722370

A correction has been published

Abstract:   We are proud that this issue marks a special contribution by the Journal of Health Psychology to the literature concerning interventions to manage adaptation to chronic health problems. The PACE Trial debate reveals deeply embedded differences between critics and investigators. It reveals an unwillingness of the co-principal investigators of the PACE trial to engage in authentic discussion and debate. It leads one to question the wisdom of such a large investment from the public purse (£5million) on what is a textbook example of a poorly done trial.

24.       Blake, Nancy, ME/CFS, NLP and the Lightning Process in the Looking Glass, Positive Health, Issue 244, February 2018

http://www.positivehealth.com/article/cfs-me/me-cfs-nlp-and-the-lightning-process-in-the-looking-glass

25.       Blomberg, J. et al, Infection Elicited Autoimmunity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: An Explanatory Model, Frontiers of Immunology. 2018; 9; 229m 15 February 2018, doi: 10.3389/fimmu.2018.00229,

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818468/

Abstract:  Myalgic encephalomyelitis (ME) often also called chronic fatigue syndrome (ME/CFS) is a common, debilitating, disease of unknown origin. Although a subject of controversy and a considerable scientific literature, we think that a solid understanding of ME/CFS pathogenesis is emerging. In this study, we compiled recent findings and placed them in the context of the clinical picture and natural history of the disease. A pattern emerged, giving rise to an explanatory model. ME/CFS often starts after or during an infection. A logical explanation is that the infection initiates an autoreactive process, which affects several functions, including brain and energy metabolism. According to our model for ME/CFS pathogenesis, patients with a genetic predisposition and dysbiosis experience a gradual development of B cell clones prone to autoreactivity. Under normal circumstances these B cell offsprings would have led to tolerance. Subsequent exogenous microbial exposition (triggering) can lead to comorbidities such as fibromyalgia, thyroid disorder, and orthostatic hypotension. A decisive infectious trigger may then lead to immunization against autoantigens involved in aerobic energy production and/or hormone receptors and ion channel proteins, producing postexertional malaise and ME/CFS, affecting both muscle and brain. In principle, cloning and sequencing of immunoglobulin variable domains could reveal the evolution of pathogenic clones. Although evidence consistent with the model accumulated in recent years, there are several missing links in it. Hopefully, the hypothesis generates testable propositions that can augment the understanding of the pathogenesis of ME/CFS.                    

26.       http://www.meassociation.org.uk/2018/06/me-association-may-summary-of-me-cfs-published-research-07-june-2018/

This link takes you to the ME Association Summary of ME/CFS Monthly Summary of ME/CFS Published Research for May, 2018.  There were about six papers, all biomedical.  The ME Association have a full archive; at the rate of six papers a month, this demonstrates that there is no lack of such research.

27.         Advancements in ME/CFS Research, David M. Systrom, MD; Brigham and Women’s Hospital.  This is a link to a video of a talk by Dr. Systrom which discusses developments in biomedical research in his field.

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=0ahUKEwi_rqmKpJ3cAhWIz4UKHaCRABcQwqsBCCkwAA&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DFMaKfv8peww&usg=AOvVaw1Cns8qB3DmsSGQkVzjj-hO

28.       Westminster Hall Debate on ME/CFS, 22 June, 2018, statement by Steve Brine, Parliamentary Under-Secretary of State for Health and Social Care.

http://www.meassociation.org.uk/2018/06/ministerial-response-parliamentary-debate-on-m-e-treatment-and-research-in-westminster-hall-22-june-2018/

Comments:

  1. Alison Orr said..

    This is an excellent summary and, as someone with cognitive dysfunctiondue to ME, I’m grateful to you for it.
    I have only one criticism. While the ME community is glad that the IOM reaffirms ME as biomedical, the report itself is lacking in many regards. There’s a danger in holding up the IOM as, not exactly the gold standard, but the go-to reference when it is so lacking, not least because, it shouldn’t be forgotten, it recommended the very unpopular and inadequate new name Systemic Exercise Intolerant Disease (SEID). Please see the comparison chart drawn up by MEAdvocacy.org at https://bit.ly/2unX06N and their blog post on the IOM and SEID at https://bit.ly/2Pqt1mD
    Many of us feel the ICC (Myalgic Encephalomyelitis: International Consensus Criteria, https://bit.ly/2LOlOL0) is more accurate, and would like to see this and its primer (https://bit.ly/2bSXrKO) used by NICE in its deliberations (and pigs might fly, I know!). There is a petition at https://bit.ly/2LElH8z urging the US health agencies to adopt the ICC.


« Prev Next »

Post Your Comments:

About Nancy Blake

Nancy Blake BA CQSW, has worked in mental health settings since 1971. She served as Chair of the ANLP PCS (now the NLPtCA), on a National Working Party developing postgraduate standards for Psychotherapy (NVQ Level 5), and contributed to the document which led to NLP being accepted as a therapeutic modality by the European Association for Psychotherapy.  She has presented workshops at UKCP Professional Conferences on an NLP approach to working with victims of abuse, and in psychoneuroimmunology.  Recovering from ME since 1986, she is the co-author, with Dr Leslie O Simpson, of the book Ramsay’s Disease (ME) about ME, as well as A Beginner's Guide to ME / CFS (ME/CFS Beginner's Guides). Both titles are available both in paperback and Kindle formats on Amazon. Nancy was previously enrolled at Lancaster University in a PhD doctoral program; her thesis topic was Conflicting Paradigms of ME/CFS and how the Psychiatric Paradigm creates its Influence in contrast to the Medical Model. She may be contacted via alternatives@alternatives.karoo.co.uk  http://nancyblakealternatives.com/ Her books are available to purchase at www.amazon.co.uk/Nancy-Blake-BA-CQSW/e/B0089NS0RK/ref=ntt_dp_epwbk_0

  • MIGRAINE RELIEF

    Migra-Cap - a unique migraine cure also offering pain relief during pregnancy. A drug-free product.

    www.migracap.com

  • nEW VISTAS HEALTHCARE

    Encourages health, strength, balance through homeopathy, nutrition, herbs, supplements, kinesiology.

    www.newvistashealthcare.com

  • Rayonex Bioresonance

    Devices vibrational medicine full range of applications and accessories research and clinical usage

    www.rayonex.co.uk

  • CHAKRA BALANCING

    Aromatherapy creams & candles. Heal naturally No side effects. Holistic treatments, powerful courses

    www.organic-aromatherapy.co.uk

  • The Naked Pharmacy

    Saffrosun Mood Balance Bergatone Weight Loss Natruflex Black Garlic Arnica Balm High Quality Natural

    www.thenakedpharmacy.com

  • College of Ayurveda UK

    Diploma in Āyurvedic Healthcare, 3-year self-paced distant learning program in Āyurvedic medicine.

    ayurvedacollege.org

  • radical spirituality

    UK publisher of rejected knowledge in areas of esoteric thought and radical streams of spirituality.

    www.imagier.co.uk

  • geovital EMF Protect

    World experts Radiation Exposure EMF Protection Holistic Natural Approach Health, Work Environment

    en.geovital.com

  • PROFESSOR Sheik IMAM

    Professor Sheik Imam is a famous professional leading African Healer who works with powerful spirits

    www.besthealer.co.uk

  • Bach Flower RemEDIES

    Kindle 3rd Edition by Anna Jeoffroy. Positive Emotional Qualities of Chakras, Annasation Techniques

    www.amazon.co.uk

  • FLEXXICORE EXERCISErs

    The FLEXXICORE exercise revolution: transform your fitness regime with 2 exhilarating exercisers

    www.FlexxiCore.com

  • Alexander Technique

    Improves the way we use ourselves in daily activity; helps prevent aches, pains, tension, fatigue.

    bloomsburyalexandertechnique.com

  • ROYAL JELLY

    We use trusted sources for our ingredients, fresh, of the best quality, and manufactured in England.

    www.theroyaljellycompany.co.uk

  • Water for Health

    Specialist online health store focused on hydration, body pH balance and quality nutrition.

    www.water-for-health.co.uk

  • Liposomal Nutrients

    Optimum system for nutrient delivery to cells - fully bioavailable vitamins absorbed and metabolised

    abundanceandhealth.co.uk

  • Ultimate Body Detox

    Immune system support & heavy metal detox - 3 powerful products: ACS 200, ACZ Nano & ACG Glutathione

    www.resultsrna.co.uk

  • Jacqueline's Diary

    When Cancer Came to Visit. In her own words harrowing shocking journey with cancer rebuild her life

    www.youtube.com

  • mycology research MRL

    MRL markets mushroom products food grade US & Netherlands GMP standards. Health Professional Videos

    www.mycologyresearch.com

  • MERCURY DETOX ALLERGY

    I use many therapies to help my patients: acupuncture, vega testing, naturopathy, herbal medicine.

    www.stephenmacallan.co.uk

  • Flower essences online

    Fine quality flower essences international ranges to help promote vitality and emotional well-being.

    www.flowersense.co.uk

  • hypnotherapy training

    A powerful way to make changes in your life, help others change theirs. Hands-on and expert tuition.

    hypnotherapytraininginternational.com

  • The Dove Clinic

    Treatment of: IBS; Allergy; Angina; CFS; Life Threatening Illness; consultations in chronic illness.

    www.doveclinic.com

  • Beginner's Guide to ME

    Essential reading for people/carers with ME/CFS serious debilitating illness. Counteracts bad advice

    www.amazon.co.uk

  • The Listening Centre

    London UK Centre for Tomatis Listening Therapy voice, language, depression, autism, dyslexia, stroke

    www.tuneyourears.com

top of the page