Top chronic fatigue researcher QUITS due to ‘hostile’ trolls
Top Oxford researcher trying to bust the mystery of chronic fatigue syndrome says he QUIT and turned his focus to new research because trolls are ‘too hostile’
- Little research on chronic fatigue syndrome exists
- Dr Michael Sharpe of Oxford University conducted one of the largest studies on the condition to-date
- His study suggested exercise and talk therapy may help reduce debilitating fatigue and increase physical activities in patients
- But a diagnostic criteria of chronic fatigue is that physical activity makes debilitating pain and fatigue worse
- And patients are often dismissed by doctors as having a mental health issue
- Dr Sharpe and his colleagues faced such aggressive trolling he has quit studying chronic fatigue altogether
Dr Michael Sharpe (pictured) says he has quit studying chronic fatigue syndrome after being the subject of online trolls
Scientists’ work may be published in journals mostly read by their peers – but that doesn’t protect them from the attacks of trolls on social media and beyond.
Dr Michael Sharpe, an Oxford University professor of psychological medicine, has told Reuters that he was so thoroughly inundated with hateful comments, emails and tweets that he has decided to quit his research focus area altogether.
Dr Sharpe is one of the few scientists who has focused his research on chronic fatigue syndrome – also known as ME/CFS – and published research that suggested the poorly-understood condition might improve with talk therapy and exercise.
But many some who suffer from the disease, as well as some who study it, have objected to his research, particularly the PACE trial, one of the largest projects on ME/CFS to date, which suggested that exercise and talk therapy may help treat it.
Critics saw the exercise component as flying in the face of the diagnostic criteria of their disease, and the therapy portion as dismissing ME/CFS as a mental health issue.
Many went beyond questioning the research, however, calling Dr Sharpe and his colleagues ‘charlatans’ and worse.
And that’s not to mention the countless vitriolic emails that inundated Dr Sharpe’s inbox.
Some activists are calling for review and replication of Dr Sharpe’s research – a valuable way of settling scientific disputes.
Trolls like Twitter user qua sar have attacked Dr Sharpe with expletives. After a Reuters article on the abuse Dr Sharpe has taken came out, he pointed out that the tone of tweet was hostile
On the other hand, trolls – including Russian bots in some cases – have fueled dangerous crusades like the anti-vaxxer movement that has made measles a public health threat in the US.
And their social media aggression may be scaring scientists away from doing research in some of the areas it’s needed most, like ME/CFS.
Dr Sharpe, according to his own Oxford University profile, focuses on complementary psychiatric care for patients with medical conditions.
‘My research aims to understand the psychiatric aspects of medical illnesses and their treatments, to develop novel interventions for these that are integrated with medical care and to evaluate these in rigorous clinical trials,’ he writes.
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That, he says, was the goal of the now-infamous (in small circles) PACE trial.
Dr Sharpe and his colleagues recruited 641 patients for the trial – a sizable sample.
PACE stands for ‘Pacing, graded Activity and Cognitive therapy: a randomised Evaluation,’ meaning that, in addition to the standard medical care they received, a portion of the patients got talk therapy, exercise routines or adaptive pacing.
After a year, patients that were engaged in exercise or talk therapy rated their fatigue lower and their physical functioning higher than patients who did neither of those things.
Patients who did adaptive pacing – which encourages people with ME/CFS to push themselves to do just as much as they can, but not too much – fared no better.
The study called both talk therapy (cognitive behavioral therapy or CBT) and exercise ‘safe’ and quantified their effects as ‘moderate.’
But both interventions bump up against sensitivities of ME/CFS.
The diagnostic criteria for ME/CFS are:
- struggling to engage with activities the person did before falling ill for at least six months;
- symptoms that get worse after physical, mental or emotional exertion;
- poor sleep and problems with cognitive function;
- and/or heart rhythm and blood pressure changes when moving from sitting to standing.
One Stanford University geneticist, who has become an ME/CFS researcher since his son suddenly developed the condition, Dr Ronald Davis, noted that the PACE study claimed that physical activity made the condition better – but the criteria for the condition state that exertion makes it worse.
Dr Ronald Davis (right) now studies ME/CFS. His son, Whitney Dafoe (left) suffers such severe chronic fatigue he can’t leave bed. Dr Davis has criticized Dr Sharpe’s study
‘There is a lot of hostility on social media about the idea of this sort of treatment,’ Dr Sharpe told Daily Mail Online.
But to Dr Sharpe, the implications of his research have been warped and weaponized against him.
‘Some people think that if this type of treatment works, it means that they weren’t really ill in the first place,’ he says.
‘I think that’s wrong. We know that these sorts of rehabilitation treatments are effective for fatigue in people with cancer and neurological diseases – that doesn’t mean that people with these conditions don’t have a real illness.
‘But some people find the idea that these treatments work unacceptable and they try to discredit both the research and the people doing it.
‘This leads to a lot of hostile and abusive messages including threats of violence towards me and my colleagues and attempts to have us de-registered as doctors.’
In other words, cancer patients often feel fatigue, but the fact that exercise helps them feel less fatigued doesn’t mean they don’t still have tumors.
Perhaps more problematically, many ME/CFS patients are dismissed by doctors and the public alike, as having a psychological rather than physiological problem.
So when members of the ME/CFS community saw a study suggesting, essentially, that if they would only exercise and go to therapy they would get better, it flew in the face of everything they knew and experienced of their own illness.
A review of Sharpe’s research found that while CBT (cognitive behavioral therapy) and gradually increased exercise could indeed offer greater improvement than management strategies without them (often consisting of simply resting to avoid worsening symptoms), it was ‘better’ compared to a low 10 percent chance that treatment would help to begin with.
So began the barrage of criticisms, wishes for Dr Sharpe’s career to come to a fiery end, and assertions that his work was misleading, bad science.
A Twitter user simply called Sharpe a ‘charlatan,’ implying his research was not valid
Many of the most outspoken and irate Twitter users and email senders were people who themselves have ME/CFS.
And they’ve just continued.
Dr Sharpe says he would no more dismiss a cancer patient’s tumors and discourage them from chemo if exercise helped them feel better day-to-day than he would give that advice to a ME/CFS patient.
Despite calls for it to be removed from the Lancet journal, where the PACE study was initially published, the PACE trial still stands.
‘All research has limitations. One of the strategies of people who are against this type of treatment is to take small limitations and suggest they are fatal flaws,’ Dr Sharpe says.
‘We don’t know what the cause of CFS/ME is, as we don’t with many illnesses. There might be a number of different causes. But that shouldn’t stop us researching treatments that might help.
‘There are treatments that can help people with CFS and some people want to try these – it’s a great shame that the disinformation spread by a minority risks people not having the option to try these treatments if they want to.’
But Dr Sharpe will no longer be among those exploring these treatments. He has decided to set aside his chronic fatigue research for good after years of online beratement.
On the other hand, science needs to be questioned and patients need to be part of the discussion.
‘It would be good if we could find a better way to use social media to achieve this. In the meantime I think it’s really important for people with medical conditions to be involved in the design of studies of new treatments – we did this in the PACE trial,’ Dr Sharpe said.
But in the meantime, he hopes that scientific organizations will step in and take up for researchers who are being chased away from their own work.
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