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In the past two weeks, The Guardian/The Observer and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research.

Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and the Oxford disease criteria, has received from the patient community for his work researching ME. The article laments how activist ME patients are using social media to stall the progress of research simply because they are unhappy with research results. Both articles portray Dr. Sharpe – and science – as a victim of these unwarranted attacks at the hands of the online ME community.  

The Guardian article headline reads, “ME and the perils of internet activism,” with the subhead: “Research into the chronic illness, which affects 250,000 people in the UK, may be stalling because of online criticism and abuse.” The headline for Psychology Today article reads “The Dark Side of Social Media Activism in Science: Scientists are targeted when results do not align with activist views.” 

The context of both articles distorts the truth and seriousness of the situation, and further stigmatizes our community.  These are hit pieces on the ME community to distract from the serious concerns over the methodological errors of Dr. Sharpe’s PACE trial. The Guardian and Psychology Today articles completely fail to mention: 

• The scientific community has resoundingly criticized the PACE trial (100+ researchers and academics signed a letter calling for an independent re-analysis of the PACE trial data), concerned about serious methodological errors in the study that have skewed the outcomes.
• Two patient surveys with more than 3,000 patient participants in total show people with ME consistently report deterioration in their health after undergoing graded exercise therapy.
• Research shows people with ME experience physiological abnormalities in their response to exercise.
• The current ME research happening around the world, including at the U.S. National Institutes of Health, the U.K Biobank, and at Harvard, Stanford, Cornell and Columbia increasingly shows the science does not support Sharpe’s beliefs about the illness.  

The PACE Trial (short for “Pacing, graded Activity, and Cognitive behavioural therapy) was a large-scale trial of treatments that compared Adaptive Pacing Therapy (APT), Cognitive Behavioral Therapy (CBT), or Graded Exercise Therapy (GET) for people with ME and Chronic Fatigue Syndrome (CFS). The Lancet published the results in 2011. The experimenters hypothesised that the CBT and GET groups would do best, and reported that this is what the trial’s results showed.  However, the claim has proved controversial among researchers and patients, largely due to serious methodological errors in the design and execution of the study, and patient experience that finds graded exercise therapy is often harmful.  

Similarly, the Oxford criteria — the broad diagnostic criteria used to recruit people for the PACE trial designed by Dr. Sharpe — is widely seen by the scientific and research community as overly broad, drawing in patients who have other conditions that could benefit from exercise and talk therapy, thus skewing the results of a study focused on people with ME. The U.S. Agency for Healthcare Research and Quality downgraded the evidence for GET and CBT for people with ME and recommended that the Oxford criteria be retired. 

How should the community respond

#MEAction has emailed the letters below to the writers and editors at the Guardian and Psychology Today. 

We encourage the community not to engage this toxic narrative online, which would give this false, damaging narrative oxygen and attention by sharing it across social media. At the same time, we encourage people to comment below the articles drawing on points from our letter pasted below. 

At the same time, we encourage the community to share on social media the many projects of scientists and people with ME, including the recent JAMA article outlining the abnormalities found in people with ME. Share the research focused on epidemiology, etiology, and treatment at Harvard, Stanford, Cornell and Columbia with all-star scientific teams. Share information and stories about the UK Biobank so that people can see the good work being done in the UK. Share stories about the NIH’s new Collaborative Centers for research. Share good articles about PACE’s flaws, but also about the very real progress we’re making in understanding the science of myalgic encephalomyelitis. And use the hashtag #ShareGoodScience so that others can find what you recommend.  Read more about ME research here.

#MEAction letter to Psychology Today 

Dear Dr. Camarata, 

We are writing with serious concerns regarding Psychology Today’s July article, “The Dark Side of Social Media Activism in Science.” The article stigmatizes a disabled population as anti-science and anti-truth, an angry mob unable to understand what is good for us. This is a highly distorted and damaging portrayal of the myalgic encephalomyelitis (ME) community.   

In the article, Dr. Camarata writes, “from my point of view, treatments that pass the rigors of evidence-based research and peer review should be welcomed with open arms and with gratitude.” The fact of the matter is that Dr. Michael Sharpe’s research has not passed the rigors of evidence-based research and peer review.  

 Dr. Camarata’s article fails to mention that the scientific community has resoundingly criticized Dr. Sharpe’s design of the PACE trial for containing multiple, serious methodological flaws. More than 100 scientists in the field have called for an independent re-analysis of the PACE trial data. 

The Centers for Disease Control and Prevention has removed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – the therapeutic approach endorsed in the PACE trial – from its recommendations for treatment, and stated that graded exercise may cause harm. The Agency for Healthcare Research and Quality downgraded the evidence for GET and CBT and recommended that Oxford — the broad diagnostic criteria used to recruit people for the PACE trial designed by Dr. Sharpe — be retired.  

Meanwhile, patients consistently report deterioration in their health after undergoing graded exercise therapy. A 2017 survey from the UK with over 1000 respondents reported that over 80% experienced worse health outcomes following GET. A recent Oxford Brookes survey of 2,274 respondents shows the majority reported deterioration or no change in symptoms and health after undergoing GET and CBT. More than two thirds (67.1%) of those who underwent GET reported deterioration in their physical health. 

There is also growing evidence that people with ME experience physiological abnormalities in their response to exercise, including reduced blood flow to the brain and heart, reduced oxygen uptake in hemoglobin, reduced oxygen utilization, and abnormal gene expression.

Patients have been outspoken about the flaws of the PACE trial because we have the most to lose from the propagation of poor science that promotes harmful or ineffective treatments. 

It took the Lancet 12 years to retract the paper supporting a link between autism and the MMR vaccine, which has done inestimable damage. The methodological flaws of the PACE trial have likewise done irreparable damage to people with ME: stalling biomedical research, quashing funding, contributing to stigma in the clinic and at home, and leading to dismal health outcomes for people with ME.  The PACE trial paper is now flagged by PLoS One with an ‘expression of concern’.

Robust research continues into ME. JAMA recently published an article outlining the abnormalities found in people with ME, including in the central and autonomic nervous system, immune system and metabolic systems. Exciting projects focused on epidemiology, etiology, and treatment push forward at Harvard, Cornell, Columbia and Stanford, with all-star scientific teams. The US National Institutes of Health funded its first research centers to study ME, and hosted its first national conference on ME and a Young Investigators Workshop to entice promising young researchers to enter the field. And the UK Biobank to study genetics of ME launched, gathering the data of thousands. You can read more about ME research here.

There can be no question that Dr. Sharpe’s current media campaign flies in the face of a modern understanding of ME.  Moreover, it bears the distinct flavor of a personal affront countered with a personal attack, simply because Sharpe’s treatments make patients worse and people with ME continue to say so. 

The history of scientific and medical progress is marked by self-correction. Sharpe’s claim that patients belong outside of the conversation for their own good — and about the issues that most closely affect their own lives — is archaic and misguided.   

We urge Psychology Today to remove the “The Dark Side of Social Media Activism in Science” from its website. Its presence stigmatizes a vulnerable patient population. Articles such as this one cause genuine harm to patients, their families, their clinicians, and their communities. 

We hope that in the future you will reach out to us and the ME community with any questions you have about ME’s history, the science behind the condition, and developments in research groups around the world. Please find attached our latest ME research summary (July, 2019) for your information. 

Sincerely,

Adriane Tillman on behalf of #MEAction 

Relevant links:
 

• #MEAction’s ME Research Summary, July 2019: http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
• 100+ scientists call for independent re-analysis of PACE trial:http://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
• Patient survey showing patients with ME deteriorate after GET: https://journals.sagepub.com/doi/10.1177/1359105317726152
• Oxford Brookes survey of 2,274 respondents shows the majority reported deterioration or no change in symptoms and health after undergoing GET and CBT.
• NPR article, “For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better:” https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better
• JAMA article: Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome: https://jamanetwork.com/journals/jama/fullarticle/2737854?resultClick=1

#MEAction letter to The Guardian 

Dear Mr. Webster and Mr. Anthony, 

We are writing with serious concerns regarding The Guardian’s 28 July article, “ME and the Perils of Internet Activism.” The article lacks context regarding Dr. Sharpe’s work, and contributes to the harmful stigmatization of a highly vulnerable population of disabled people. 

The reality of the PACE trial is that Dr. Sharpe has produced poorly-designed research that has been resoundingly criticized by the scientific community. Patients have been outspoken about the flaws of the PACE trial because we have the most to lose from the propagation of poor science.

It took the Lancet 12 years to retract the paper supporting a link between autism and the MMR vaccine, which has done inestimable damage. The methodological flaws of the PACE trial have likewise done irreparable damage to people with ME: stalling biomedical research, quashing funding, contributing to stigma in the clinic and at home, and leading to dismal health outcomes for people with ME.  The PACE trial paper is now flagged by PLoS One with an ‘expression of concern’.

The Guardian article fails to mention: 

• 100+ scientists have called for an independent re-analysis of the PACE trial data due to serious concerns about methodological flaws in the study.
• 40+ researchers and academics support the temporary withdrawal of the Cochrane review of graded exercise therapy for ME/CFS based on concerns about methodological flaws in cited studies, explicitly stating that their decision was in no way due to “patient pressures”.
• Patients consistently report deterioration in their health after undergoing graded exercise therapy (GET), the therapeutic approach endorsed in the PACE trial.  A survey from the UK with over 1000 respondents reported that over 80% experienced worse health outcomes following GET. 

In the US, the Centers for Disease Control and Prevention has removed GET and cognitive behavioural therapy (CBT) from its recommendations for treatment and stated that graded exercise may cause harm. The US Agency for Healthcare Research and Quality downgraded the evidence for GET and CBT and recommended that Oxford — the broad diagnostic criteria used to recruit people for the PACE trial — be retired.  

 There is growing evidence that people with ME experience physiological abnormalities to exercise, including reduced blood flow to the brain and heart, reduced oxygen uptake in hemoglobin, reduced oxygen utilization, and abnormal gene expression.

In the UK House of Commons, 40 MPs passed a motion to support increased funding into biomedical research, and the suspension of graded exercise therapy. The Danish Parliament recently announced that it will unanimously support using the World Health Organization (WHO) classification of ME as a neurological disease.

A sea-change in science has led to a shift in the way researchers and clinicians understand ME.  And it goes without saying that this is an unsettling situation for people who have staked their careers on recommending GET and CBT for people with ME. 

Robust research continues into ME. JAMA recently published an article outlining the abnormalities found in people with ME, including in the central and autonomic nervous system, immune system and metabolic systems. Exciting projects focused on epidemiology, etiology, and treatment push the forward at Harvard, Cornell, Columbia and Stanford, with all-star scientific teams. The US National Institutes of Health funded its first research centers to study ME. And the UK Biobank to study genetics of ME launched, gathering the data of thousands. You can read more about ME research here.

We urge The Guardian Media Group to carefully consider how articles about ME are approached going forward to minimise any damaging bias.

We hope that in the future you will reach out to us and the ME community with any questions you have about ME’s history, the science behind the condition, and developments in research groups around the world. Please find attached our latest ME research summary (July, 2019) for your information. 

Sincerely,

Espe Moreno on behalf of #MEAction UK 

Attachments and links: 

• #MEAction’s ME Research Summary, July 2019: http://www.meaction.net/wp-content/uploads/2019/06/19_MEA_Revised_2019_Research_Summary_190610.pdf
• 100+ scientists call for independent re-analysis of PACE trial: https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh
• Patient survey showing patients with ME deteriorate after GET: https://journals.sagepub.com/doi/10.1177/1359105317726152
• NPR article, “For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better:” https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better
• JAMA article: Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome: https://jamanetwork.com/journals/jama/fullarticle/2737854?resultClick=1