Guest blog by Bronc Lawson
Dr William Weir is a retired physician who has treated ME/CFS patients for many years and who still sees them privately. He has been advising the National Institute for Health and Care Excellence (NICE) on the new clinical guideline and has recently authored an article about dogma and science in ME/CFS with Dr Nigel Speight:
ME/CFS: Past, Present and Future by Drs William Weir and Nigel Speight | 03 August 2021
Abstract
This review raises a number of compelling issues related to the condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Some historical perspective is necessary in order to highlight the nature of the controversy concerning its causation.
Throughout history, a pattern tends to repeat itself when natural phenomena require explanation. Dogma usually arrives first, then it is eventually replaced by scientific understanding. The same pattern is unfolding in relation to ME/CFS, but supporters of the psychological dogma surrounding its causation remain stubbornly resistant, even in the face of compelling scientific evidence to the contrary.
Acceptance of the latter is not just an academic issue; the route to proper understanding and treatment of ME/CFS is through further scientific research rather than psychological theorisation. Only then will a long-suffering patient group benefit.
1. How did you get involved in the field of ME/CFS?
Dr Weir: During my tenure as a consultant in Infectious and Tropical Disease at the Royal Free Hospital in London, I began seeing patients whose acute infection (often serious, such as malaria or meningitis) had been effectively treated, but who remained unwell with what is now recognised as ME/CFS. In those days, the problem was often called a “post-infectious syndrome” and was frequently labelled as “atypical depression”.
2. In the introduction to your recent article, ‘ME/CFS: Past, Present and Future', you observe that history is littered with examples of human disease being initially explained by dogma created by powerful hierarchies.
This dogma is the result of a void in the comprehension of a particular disease which is later replaced by rational scientific understanding. One famous example of the medical profession “getting it wrong’’ was the belief that bloodletting was an effective treatment for cholera in the mid-19th century, when in actual fact this merely hastened the demise of many sick patients.
You note that the story of ME/CFS is a more recent example of dogma and observe that, “If GET were a drug, it would have been banned rapidly by the appropriate regulatory body,….’’ Can you explain what you mean by this?
Dr Weir: Graded Exercise Therapy (GET) is now recognised as very harmful in ME/CFS, but can be useful in patients with depressive illness, in whom exercise can be therapeutic.
The best example of drug-related harm here is thalidomide, a drug developed in the 1950s which was effective in the treatment of morning sickness in pregnancy, but with the tragic side effect of serious deformities in the unborn babies.
The relationship between this side effect and thalidomide took a while to recognise, although the Federal Drug Agency in the USA banned it initially because it was felt that there was not enough evidence from the early trials that it was safe. Consequently, very few babies were born in the USA with thalidomide related deformities.
Because of the thalidomide story and the American success at largely preventing the problem, national drug monitoring agencies nowadays are very much on the alert for side effects from new drugs reaching the market (or even drugs already on the market). Sadly, this vigilance by drug regulatory agencies does not yet apply to other forms of treatment, such as GET.
The dominant forces within the UK medical establishment have given priority to research funding and political support to the psychiatric route to diagnosis and treatment of patients with ME/CFS. This has been supported, with some notable exceptions, by the majority of parliamentarians who, over the years, have been largely indifferent to the plight of citizens afflicted with ME/CFS.
Over the years they have chosen to ignore the recommendations of the Chief Medical Officers 2002 report into ME/CFS and the recommendations of the 2006 Gibson Inquiry.
This has led to the development of psychological treatments such as GET which many with ME/CFS regard as being harmful to their health. There is a wealth of scientific evidence to support patient testimony that GET is harmful, yet influential sections of the medical establishment remain attached to this scientifically unsound treatment.
The adherence of some members of the medical establishment to GET for ME/CFS is reminiscent of the use of bloodletting in cholera. In both cases, dogma is/was the driving force. Funding efforts for proper scientific (i.e., non-psychological) research into ME/CFS has been hampered by such dogma.
3. The recent decision by NICE to suspend publication of the update to the ME/CFS clinical guideline seems to be further evidence of this attachment. Is this a fair assumption to make?
Dr Weir: NICE are being influenced by vested interests that remain trapped by their own dogma. NICE cannot afford to give way to such influence, as it would be contrary to their statutory obligation to provide advice based on science. Were they to do so, they will lose integrity and credibility.
4. In your article you note that recent advances in our understanding of ME/CFS completely undermine the dogma of the psychological causation theory.
The intolerance to exercise which is a central feature of ME/CFS has been explained by numerous studies which point to abnormalities of muscle metabolism. Despite this, the proponents of psychological treatments explain the intolerance to exercise as being due to “exercise phobia’’.
Can you explain the “anaerobic threshold’’ and why it contributes to the physical exhaustion many feel after exertion?
Dr Weir: The anaerobic threshold is the point at which vigorously exercising muscles – in normal health – switch metabolic pathway from using oxygen to a different pathway which doesn’t use oxygen. This is then followed rapidly by a sensation of exhaustion.
In a normally healthy person, an all-out short sprint of perhaps 100 yards will engender this sensation of exhaustion, due to the anaerobic threshold being crossed. The sprint is then followed by a minute or two of heavy breathing (“air hunger”) to take in extra oxygen to clear the accumulated lactic acid which is a by-product of the anaerobic pathway.
In ME/CFS, the anaerobic threshold is crossed abnormally early in practically any form of exertion, even with the minimal effort of getting out of bed or walking across a room. Because the anaerobic threshold has been thereby crossed, lactic acid is produced.
Consequentially air hunger can follow such minimal exertion, giving rise to the mistaken belief that there is a problem with the lungs. “Exercise phobia” is a completely erroneous, pseudoscientific concept without a scientific evidence base.
5. Your article mentions immune dysfunction in ME/CFS as “giving pathological validity to the term myalgic encephalomyelitis”.
Dr Weir: Evidence of abnormal immunological activity has been detected in the cerebrospinal fluid, providing evidence of an immunological process affecting the brain and spinal cord. Hence the term encephalomyelitis.
6. How does immune dysfunction work in ME/CFS?
Dr Weir: The immune system seems to be abnormally sensitive to normally harmless substances, e.g., in food, perfumes, drugs of various kinds. In lay terms it can be described as “neurotic” and seems to be constantly “on the alert” for no good reason. It is thereby dysfunctional but the exact cause is not yet known.
7. You mention that a ‘reliable biomarker’ is currently being developed. Can you elaborate on this development?
Dr Weir: In lay terms work at Ron Davis’ lab has shown that white blood cells in ME/CFS are more fragile than white cells from healthy people when subjected to a hyperosmolar environment, i.e., a concentrated salt solution.
Such fragility was demonstrated by measuring the electrical “distress signals” from the affected cells. The test was very accurate and there were no false positives. I am hopeful that the principle demonstrated will eventually be the basis of a widely available test.
8. In the conclusion to your article, you paraphrase Einstein and state that “the definition of insanity is to do the same thing again, expecting a different result”. How does this relate to the current state of affairs regarding research into ME/CFS in this country?
Dr Weir: There is evidence that “Long Covid” is being regarded in some quarters as having a psychological basis, although it is very likely to be a variant of ME/CFS.
Nonetheless there is evidence that GET and CBT are being advised in some treatment centres, applying the same principles as were used in the PACE trial, despite its egregious shortcomings. In such instances, insanity is clearly still in charge.
9. People with ME/CFS experience high levels of functional impairment scoring lower overall on health-related quality of life tests than many other chronic health conditions yet there is no recognition of this by health and welfare agencies.
To compound matters, many with ME/CFS and their families have to bear significant financial costs as most people with the illness are unable to work.
Meanwhile, they face huge barriers trying to navigate a punitive benefits system that is shaped by the psychological approach to ME/CFS. To top it all off, there has been a paucity of funding into biomedical research.
What measures should public health/disability benefits agencies take to improve the life prospects for people with this debilitating disease?
Dr Weir: Education, education, education. The bureaucrats who run the various agencies mentioned need to educate themselves as to the truly debilitating nature of ME/CFS, and act accordingly.
The medical schools also need to put this horrible disease firmly on their curriculum, so that the medical profession can start providing effective support for their patients.
Citation for the article which the interview is based on:
Weir, W., Speight, N. ME/CFS: Past, Present and Future: Healthcare 2021, 9, 984.