Smearing MECFS Patients in the Name of Science

A previous post reviewed the SMC’s ‘expert reactions’ concerning MECFS between 2011 and 2017.

Here I review the Science Media Centre’s continued smearing of MECFS patients in a set of carefully curated ‘expert reactions’ to MECFS research between 2017 and 2020,

I expose here further evidence of a deliberate smear campaign of a vulnerable patient group. This campaign has been steered by the director of the SMC, Fiona Bernadette Fox OBE, with the willing assistance of medical and psychological scientists at prestigious institutions such as Oxford University and King’s College London.

The SMC describes itself as: “an independent press office helping to ensure that the public have access to the best scientific evidence and expertise through the news media when science hits the headlines.” Far from being independent, the SMC is funded to well over £500,000 by companies such as: GlaskoSmithKline and Wellcome and Universities such as King’s College London and Oxford.

All for the good of science and humanity, one might expect, but is it really? Not only is this not good science, it is not good journalism either. It is nothing more than pseudoscience verging on a cult. I review the evidence on this in a paper published elsewhere.

Ask a patient with MECFS and you might be surprised that all is not well with the SMC’s view of the condition. The SMC chooses to review a narrow band of researchers allied to a particular, contentious view that MECFS is a psychosomatic disorder based on the unscientific ‘Biopsychosocial Model’.

Curiously for an organisation claiming to represent science, there is almost zero mention of any proper scientific research on the biological basis of the disorders.

What exactly has the SMC been up to? Why has the SMC adopted the peculiar cause of a few researchers from its member institutions at the expense of the wellbeing of patients?

Below, the text of the experts’ reactions on MECFS research is examined with the author’s annotations in [square brackets].

NOVEMBER 10, 2020

expert reaction to NICE draft guideline on diagnosis and management of ME/CFS

Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, [WS member, no conflicts of interest declared] said:

“As the NICE report says, it is paramount that patients are listened to and their symptoms and concerns taken seriously. It is also essential that evidence-based rehabilitative treatments (graded activity/exercise and cognitive behaviour therapy) are given only to those patients who want them and then given in a personalized expert fashion in partnership with them. It is to be hoped that these new guidelines improve the quality of delivery of these treatments. It is also to be hoped that the strongly stated concerns about the effect of badly delivered [badly delivered or inappropriate?] treatments do not make it even harder for patients to access the well delivered, evidence-based treatments.” [This statement is distracting spin. The NICE guidelines reject the use of CBT and GET. The issue is not about quality of delivery of treatments, it is about the appropriateness of the treatments in the first place.]

Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, [ PACE investigator, no conflicts of interest declared] said:

“Cognitive behaviour therapy (CBT) and graded exercise therapy (GET ) are evidence-based treatments for chronic fatigue syndrome (CFS) in that they facilitate reductions in fatigue [measured by the Chalder Fatigue Scale, with all of its flaws] and improve people’s quality of life if delivered by a qualified therapist. Previous reviews of the science provide the evidence [which the NICE (2020) report finds to be of low or very low quality]. Our clinics are full of patients who are very keen to receive these evidence-based treatments and our patient reported outcomes support their use. My concerns are a) that patients should be offered these treatments to avoid a situation in which their condition stays the same or worsens [which is exactly what the NICE (2020) report suggests happens with GET] b) that health professionals will stop offering evidence-based treatments.” [NICE (2020) recommends against the use of GET and Lightning Process and so if health professionals stopped offering these treatments, that would be a desirable outcome.]

Prof Sir Simon Wessely, Regius Chair of Psychiatry, King’s College London, [no conflicts of interest declared] said:

“As someone who has been treating patients with ME/CFS for over 30 years [e.g.  Ean Proctor] I am in no doubt of the importance of continuing to treat CFS patients with empathy and respect, and offering individualised patient centred care. [Empathy and respect? Dropping them into swimming pools, scaring them on ghost trains and with vigorous wheel chair projection to the amusement of the staff?]  This was in the previous NICE guidelines in 2007, and it is depressing that this still needs to be said today. [Especially for hundreds of thousands of MECFS patients.] If even one patient feels that they are not been taking seriously, there is more work to be done. [There is a huge amount of work to be done because there are hundreds of thousands of MECFS patients who feel that they have not been taken seriously and many attribute this to the BPS psychosomatic approach that claims the symptoms are psychological rather than neurological or immunological.]  13 years ago there were only two treatments with clinical trial support, namely graded exercise therapy (GET) or cognitive behavioural therapy (CBT), and that has not changed over the years. In the new guidelines NICE has again emphasised that these approaches should not be fixed or set in stone, [A gross distortion of what NICE report actually says : the guidance clearly states that GET should not be used and CBT should have only a supportive role] which is already the case for those few centres with proper supervision and expert leadership that do provide such services at present. Such services will agree that “unstructured exercise that is not part of a supervised programme” [forms of GET] should be avoided.  There is a lot of helpful detail as to how such programmes should be implemented, but still some odd inconsistencies.[Innuendo without substance.]  Finally, sufferers should rightly beware any claims of miracle cures from any quarter, [e.g. the Lightning Process which theresearch team has promoted in three publications including a clinical trial] but be reassured that existing programmes that take a cautious, collaborative, clinically supervised approach, backed by evidence from randomised controlled trials, [none of the trials run bythe research team were controlled for placebo or attention effects] the gold standard of assessing effectiveness, offer some hope [to whom? patients?] of meaningful improvement in what remains a complex, little understood and still sometimes misunderstood condition.”

Prof Peter White, Emeritus Professor of Psychological Medicine, Queen Mary University of London, [WS member, no conflicts of interest declared] said:

“NICE is usually commended by being led by the science. It is therefore a great surprise that this guideline proscribes or qualifies treatments for CFS/ME for which there is the best evidence of efficacy, namely graded exercise therapy (GET) and cognitive behaviour therapy. [A great surprise? There has been a huge amount of criticism of GET and CBT for MUS/MECFS patients over the last 10 – 20 years.]

“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET, when the largest ever trial of GET showed that it significantly reduced this symptom more than staying within one’s energy envelope. [Misleading]. Should this guideline be adopted as suggested, I fear that it will discourage healthcare professionals from offering the two treatments that give patients the best chance to safely improve their health.” [This ‘discouragement’ is based on ‘evidence-based practice’].

APRIL 29, 2019

expert reaction to study investigating a potential biomarker for chronic fatigue syndrome / ME

Prof Sir Simon Wessely, Regius Chair of Psychiatry, Institute of Psychiatry Psychology & Neuroscience, King’s College London (IoPPN), and President, Royal Society of Medicine, [no conflicts of interest declared] said:

“There have been many previous attempts to find a specific biomarker for CFS.  The problem is not differentiating patients with CFS from healthy controls.  The issue is can any biomarker distinguish CFS patients from those with other fatiguing illnesses?  And second, is it measuring the cause, and not the consequence, of illness? This study does not provide any evidence that either has finally been achieved. [Excellent point. However, the same issue applies to the entire research programme of the team at King’s. Multiple occurrences of inappropriate causal language are employed in papers by the King’s team. See Table 2]. It is also regrettable that it is claimed that such a test would give “scientific proof” of the existence of the condition, and prove it is “not imaginary”.  You don’t need a blood test to prove that an illness exists, and nor does the absence of such a test mean that it is “all in the mind”.  Any sub who runs a headline that says ‘new test proves CFS is real and not psychiatric’ should be ashamed of themselves.” [Any sub or Psychiatrist who says CFS is a psychiatric condition and not organic one should be equally ashamed of themselves because this has never been scientifically demonstrated. See section 3.]

MARCH 22, 2018

reanalysis of the PACE trial

Comment from three authors of the original PACE trial

Prof Michael Sharpe, Professor of Psychological Medicine, University of Oxford, Prof Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, & Dr Kimberley Goldsmith Senior Lecturer in Medical Statistics, Institute of Psychiatry Psychology & Neuroscience (IoPPN), King’s College London, said:

“Wilshire et al have written a critique of several papers reporting on the PACE trial of treatments for CFS/ME, of which we are authors.  They also report a reanalysis of the PACE trial data.  We note that most of the analyses they report have already been published, either in peer reviewed journals or by ourselves on the PACE trial website (https://www.qmul.ac.uk/wolfson/research-projects-a-z/current-projects/pace-trial/). [At the time of going to press, this website was unavailable. On 25 July 2021 it stated: “Sorry, the page you requested could not be found.”]

“They report different results from the original trial. However this is not surprising as their analyses used only part of the trial dataset and followed a preliminary PACE analysis plan, rather than the final approved and published one. Furthermore they do not refer to the many other trials and meta-analyses that have replicated the findings of the PACE trial. [Misleading criticism: Wilshire et al. (2018) aimed to provide a reanalysis of the PACE trial only, not an entire literature review, which was carried out by NICE (2020).]

“In conclusion we find little of substance in this critique and stand by our original reports. These are all available through the trial website [As noted, at the time of going to press, the trial website was unavailable. On 25 July 2021 it stated: “Sorry, the page you requested could not be found.”] The PACE trial found that CBT and graded exercise therapy are safe and moderately effective treatments; a positive message for people who suffer from this otherwise long-term debilitating illness.”

SEPTEMBER 20, 2017

The Lightning Process – a controversial treatment  for children with chronic fatigue

The Lightning Process is a controversial treatment that is sometimes used for children with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), a disabling illness that means 1% of UK secondary school children miss a day a week or more of school. Describing itself as “a training course that focuses on the science behind how the brain and body interact”. The Lightning Process has been met with scepticism in the scientific community. [Largely because it is a pseudoscientific, pyramid scheme based on Neurolinguistic Programming, strange rituals and osteopathy.]

Researchers decided to test the robustness of this treatment so, despite activists trying to stop them, [An unfounded ad hominem denigration of critics] they ran its first ever trial – an RCT that looked at the effectiveness and cost-effectiveness in children with CFS/ME. The results are published in the Journal of Archives of Disease in Childhood [twice – the second time with major corrections – after the changed endpoints and ethical shortcomings were exposed.]

SEPTEMBER 20, 2017

expert reaction to controversial treatment for CFS/ME

* ‘Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial’ by Crawley et al. published in Journal of Archives of Disease in Childhood on Wednesday 20th September.

Prof. Alastair Sutcliffe, Professor of General Paediatrics, UCL, said:

“A recent systematic review of neurolinguistic programming (NLP) stated “There is little evidence that NLP interventions improve health-related outcomes. This conclusion reflects the limited quantity and quality of NLP research, rather than robust evidence of no effect. [An interesting distinction.  There is currently insufficient evidence to support the allocation of NHS resources to NLP activities outside of research purposes.” [Br J Gen Pract. 2012 Nov; 62(604): e757–e764. Published online 2012 Oct 29. doi:  10.3399/bjgp12X658287, PMCID: PMC3481516]. But now we have this interesting study by Crawley, a well-conducted single blind clinical trial that suggests NLP, in combination with other therapies and described as the ‘Lightning Process’, is effective for some children with the very hard to treat condition of chronic fatigue syndrome (CFS).

“Although in my view the effects described show some benefit and are therefore to be welcomed, this could be due to placebo which would still be GOOD news. Costs are modest [Costs range between £775 and £2500 per patient] and therefore this study is to be welcomed.

“These press releases are accurate, however, there is no reference to the fact that the effect may be due to placebo as this is a single-blind trial. But in a sense this is not so important [most investigators who run clinical trials would be disappointed if the intervention being trialed was shown to be a placebo effect and nothing more] and as the trial shows convincing evidence of benefit [convincing to whom?] and as placebo is impossible to quantify [yes, in any trial that does not include a placebo control group] we are left with the alternative possibility that these children benefited from the package of care per se, rather than the nebulous placebo effect.[It is impossible to reach this conclusion with an RCT design which lacks a control condition.]

“CFS is a difficult to treat and common disorder, so overall I welcome this step in the direction of evidence-based care as, at present in the UK, there is little agreement about what is the best way to treat this illness.” [The Crawley et al. trial is not a step in the direction of evidence-based care nor can it offer any robust conclusions about the best way to treat MECFS because of its many ethical and design flaws. A flawed trial that allows no advancement in scientific understanding is a waste of public research funds, patient goodwill and time.]

Prof. Dorothy Bishop, Professor of Developmental Neuropsychology, University of Oxford, said:

“The gains for patients in this study do seem solid, however, I am still rather uneasy because while the patient allocation and statistical analysis of the trial appear to be done to a high standard, the intervention that was assessed is commercial and associated with a number of warning signs. The Lightning Process appears based on neurolinguistic programming, which, despite its scientific-sounding name, has long been recognised as pseudoscience. [Valid statement.]

“I am sympathetic to the authors’ decision to evaluate the Lightning Process (LP), given that they had patients who had used it and reported favourably on it, and it could be argued that to fail to do so would indicate a degree of closed-mindedness [Absurd statement. Not anything patients have tried should be evaluated in a clinical trial, for example,  hyperbaric oxygen therapy, “chi deficiency”, acupuncture, naturopathy and chiropractic (invented by D. D. Palmer, who took his instructions from a talking ghost) purely to avoid the appearance of a ‘degree of closed-mindedness’? The potential harms, lack of scientific rationale and the wastage of research resources investigating quack practices cannot be entertained for the sake of ‘open-mindedness’.] But the commercial nature of LP really creates problems. We cannot tell which aspect of LP is responsible for the gains in patients who took part.

“I noticed, for instance, that LP involves group sessions, whereas the comparison group undergoing standard medical care were treated individually. So it may be that the benefits derive from interacting with other children with chronic fatigue syndrome/ME, rather than the specific exercises and training. This is, of course, something that could be investigated in future research [This factor could and should have been controlled in this trial] but meanwhile the concern is that this report will in effect act as positive publicity for a programme that is being proposed for a wide range of physical conditions (including chronic pain, low self-esteem, multiple sclerosis, and depression, to name just a few) and has to date been promoted largely through celebrity endorsements.” [The author previously has said that the technique is based on pseudoscience, yet she is suggesting further research should be carried with improved controls and so she is advocating further research on what she has categorised as a pseudoscientific therapy.]

Dr James Thompson, Honorary Senior Lecturer in Psychology, UCL, said:

“The treatment in this study looks like it had an effect, at least by the standard of most clinical trials. To be extra robust I would have liked to see more objective measures, but unfortunately chronic fatigue syndrome is not an objective diagnosis, it is a leftover category and fatigue is subjective. [Misleading criticism. Not having an objective diagnosis does not prevent objective measurements of improvement, e.g. activity measures.]

“One limitation is that self-report scales can be subject to placebo effects, however if the patients feel better in the experimental condition in which they receive extra help, even if everyone knows it, then that is something and the pupils miss less school, which is an objective measure. In this case it may not have been the CBT element of the treatment, but it looks like it.” [It cannot ‘look like it’ because it is impossible to tell without proper control conditions.]

Prof. Michael Sharpe, Professor of Psychological Medicine, University of Oxford, [WS member, no conflicts of interest declared] said:

“Chronic fatigue syndrome (CFS) is a name for an illness with symptoms of long lasting and disabling fatigue. It affects many young people and can interfere with their education. Whilst some people call it myalgic encephalomyelitis (ME) it is not clear if this is the same or a different condition.

“This trial tests the effectiveness of a commercially available brief intensive talking therapy for CFS called the Lightning Process. The treatment has similarities to cognitive behaviour therapy (CBT) and is given in groups. [The treatment also has differences, e.g. CBT does not require participants to: Tell everyone that you have been healed;  Perform magical rituals such as standing in circles drawn on paper with positive keywords inscribed; etc] The treatment was found to be better than usual care in fatigue, physical function and school attendance, with benefit seen as long as a year later. It was also safe. The study does not tell us how it works however. [The study does not even tells us if it works.]

“This is a robust study because patient were allocated to one of the two treatments at random ensuring that any difference seen in outcome between these treatments, is not due to pre-existing differences in the patients. The main limitation is that, as it is not possible to hide which treatment they received from the patients, their self-ratings of fatigue and functioning could potentially be biased by their views on the treatment they received. [These criticisms are true of all trials run by the BPS school including the PACE trial but the author has never acknowledged this fact.] However, differences in the school attendance a year later were also noted; it seems [un?]likely (sic) that these could be due to such a bias.

“Commercially available treatments like this one that are being used by patients should be rigorously tested. This is especially important for an illness like this one about which much misinformation is spread using social media. [And by medical journals that pass defective trials though peer review and refuse to retract them.] We need more studies and less polemic.” [!]

Published by David F Marks

Author, editor, psychologist.

2 thoughts on “Smearing MECFS Patients in the Name of Science

  1. Thank you David! I shared this on twitter and facebook. Here’s the fb intro I used – ‘fabulous truth-telling about the SMC & the UK press. Hopefully the next blog covers how the SMC prevented coverage of biomedical ME research for decades (much of it under Wessely I believe). Thankfully that is starting to change.’

    Liked by 1 person

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