‘If my team’s research on ME is rejected, the patients will suffer’| Prof Peter White, The Guardian | 30 September 2016

From The Guardian, 30 September 2016. Comment piece by Professor Peter White.

Chronic fatigue syndrome – sometimes called ME (myalgic encephalomyelitis) – is a sad tale for everyone involved. It is a debilitating illness that affects about 250,000 children and adults in the UK alone, wrecking lives as people are unable to hold down a job and are sometimes left bed-bound for years on end.

Unfortunately these patients have not been treated well – their illness is often dismissed or belittled, leading to much anger, misinformation and argument. There are claims of foul play, with issues over freedom of information and sharing of trial data; this week it was claimed that sexism is part of the reason those with ME struggle to get the proper treatment. My colleagues, Professors Trudie Chalder and Michael Sharpe, and I have spent our careers trying to improve care for patients with CFS/ME. At the heart of this story is the Pace trial we have been conducting since 2005.

For many years Nice (the National Institute for Health and Care Excellence, which oversees healthcare evidence) recommended just two treatments – graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – because it had the best evidence that these therapies worked. However, many patients were not using them, following instead a self-guided treatment called “pacing”: listening to the messages from their bodies and pacing themselves – trying not to do too much, wary of pushing themselves to a point where they might make the illness worse. The idea of doing exercise therapy was scary for some patients, worried that over-exertion would exacerbate their ill-health. The idea that CBT, a talking treatment, might help, raised fears that the illness was regarded as “merely psychological”, or even “all in the mind”.

With so much uncertainty and fear among patients, we wanted to find out which of these treatments worked best and whether they were safe. So we ran a large trial with 640 patients that would seek to replicate earlier studies, but on a much bigger scale. All those who took part were given specialist care and randomly allocated to also receive either pacing therapy, CBT, GET, or nothing extra. We had involvement from CFS/ME community, and the research was overseen by independent committees looking at data, safety and how the trial was run.

The results of our study, published in The Lancet in 2011, were clear – those patients given CBT or GET experienced significantly greater improvements in both symptoms and ability to do things, compared with either pacing therapy or specialist medical care alone. Not only were CBT and GET more effective: crucially, they were just as safe as the other treatments when done correctly.

Our results confirmed the earlier smaller trials, and strengthened the evidence upon which the recommendations of Nice were based. Added to this, a recent Cochrane review (a summary of all the evidence, and considered the gold standard in medical research) also concluded that exercise is a safe and effective treatment. In short, CBT and GET are safe, can definitely help some people and are more effective than other treatments: but, as with all treatments in medicine, they cannot help everyone.

From here on this should have become a happier story. However, some of the ensuing newspaper headlines – such as “Got ME? Just get out and exercise, say scientists” – gave the misleading impression that patients just needed to pull themselves together, or even that they were making it all up. In our clinics we had seen far too much suffering to ever think this illness could be dismissed in this way.

Our research, and that of our colleagues in this field, has attracted its fair share of criticism. Some campaigners have even called for the research to be stopped, the findings retracted, and CBT and GET abandoned completely as they cause harm. One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT.

In the latest step in this saga, a blog that hasn’t gone through the rigours of scientific peer-review, or being published in a journal claims that CBT and GET are not as effective as we reported. The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”.

Whichever way the data is viewed, patients get better results from CBT and GET – both confirmed as safe – than they do from pacing or medical care alone.

This whole affair is perhaps saddest for the patients themselves, whose suffering has been neglected for far too long. However, there is hope. First, the important message for patients is that it is possible to get treatment that will help them improve and for some to recover. Second, we agree with campaigners that we need more research into the causes and treatments of CFS/ME. However, if their campaign puts people off trying CBT and GET, it will be the patients themselves who will suffer the most.

4 thoughts on “‘If my team’s research on ME is rejected, the patients will suffer’| Prof Peter White, The Guardian | 30 September 2016”

    1. According to Margaret Williams’ letter, ‘PROOF POSITIVE ? (REVISITED)’ written on the 14th September 2016:
      In 2004 Peter White himself published a paper on ‘Immunological changes after both exercise and activity in chronic fatigue syndrome: a pilot study.’ In that article, White et al stated:
      “We designed this pilot study to explore whether the illness was associated with alterations in
      immunological markers following exercise. Immunological abnormalities are commonly observed in CFS…Concentrations of plasma transforming growth factor-beta (TGF-beta) (anti-inflammatory) and tumour necrosis factor-alpha (TNF-alpha) (pro-inflammatory) have both been shown to be raised….Abnormal regulation of cytokines may both reflect and cause altered function across a broad range of cell types…..Altered cytokine levels, whatever their origin, could modify muscle and or neuronal function.”
      “Concentrations of TGF-beta1 were significantly elevated in CFS patients at all times before and after exercise testing.”
      “We found that exercise induced a sustained elevation in the concentration of TNF- alpha which was still present three days later, and this only occurred in the CFS patients.”
      “TGF-beta was grossly elevated when compared to controls before exercise (and) showed an increase in response to the exercise entailed in getting to the study centre.”
      “These data replicate three out of four previous studies finding elevated TGF-beta in subjects with CFS.”
      “The pro-inflammatory cytokine TNF-alpha is known to be a cause of acute sickness behaviour,
      characterised by reduced activity related to ‘weakness, malaise, listlessness and inability to
      concentrate’, symptoms also notable in CFS.”
      “These preliminary data suggest that ‘ordinary’ activity (ie. that involved in getting up and travelling some distance) may induce anti-inflammatory cytokine release (TGF-beta), whereas more intense exercise may induce pro-inflammatory cytokine release (TNF-alpha) in patients with CFS”.
      Even his own research indicates to us that Prof. White knows exactly what he’s doing.

  1. Peter White if it was not for your Team including others in the UK we would have had proper funding for bio-medical research the bottom line is your CBT/GET is useless it does not work you Publish nonsense this illness is not helped with exercise…You will never understand this illness ever so Please Stop Publishing pure stupidness I have even seen countless diagnosed with CFS/ME & they have a Lyme disease illness…The National CFIDS Foundation Gail Kansky’s Teamsays its Radiation Sickness even Hamilton Radiation experts have now submitted several replicted Papers for publication on Chernobyl experts findinds can you now Please explain why People countless are Positives in urine/blood/tissue samples to Govt. testing for Radiation Sickness & why Dr David Bell now work inside an Office close to Buffalo New York with the leading Chernobyl Radiation expert & Yes they are seeing patients with Radiation Sickness can you tell me how many of your tests have looked for Radiation in these patients? I know the answer to that you never ran these test ’cause your Funding would Stop…By the way you talk about your reputation well that went out the window decades ago…Get real or Please got off the b.s. Pot u r doing more harm than good…

  2. How many times does this last piece of “research” have to be discredited before Prof. White and his colleagues shut up about it?

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