An advocate and campaigner living with ME explains why she opposes Bristol University’s trials on children with the condition.

In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of cognitive behaviour therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness. However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. Bristol is also trialling a controversial ‘graded exercise therapy’ (MAGENTA).  As an ME sufferer myself, I am deeply troubled to see the continued use of approaches to treat ME that can harm sick children instead of helping them.

Adults with ME feel that our views on these issues are usually ignored or caricatured. Children with ME have even less of a voice.

The hallmark of ME is an exacerbation of symptoms following physical or cognitive exertion. The repercussions are usually delayed by a day or two and sometimes a relapse can be indefinite. One day I was out walking my dog on the Downs, the next day I was struggling to sit up in bed. Biological findings into ME (myalgic encephalomyelitis) involve the immune system, metabolism and mitochondria. There seems to me no logical explanation for how this could be reversed by CBT or graded exercise.

At the 2016 conference for the International Association for Chronic Fatigue Syndrome/ME, the only CBT-focused study (larger than Bristol’s FITNET-NHS one) concluded that “findings suggest that individuals do not reduce activity level due to illness beliefs, as proposed by the cognitive behavioural theory of CFS… exercise-based interventions lack empirical justification”. The nature of patient opposition to the Bristol trial also includes similar studies failing to report differences at long-term follow-up, poor definition of ME/CFS and reliance on subjective measures.

Graded exercise therapy is more controversial still and reports more harm than benefit in patient surveys. In one ME Assocation survey 74% reported harm, including starting to need a wheelchair and becoming bed/housebound. Patients aren’t made aware of these risks and if you become severely affected there is no antidote or effective treatment available.

Child studies usually need to be justified by beneficial adult evidence. MAGENTA is based on an infamous £5m study (known as the ‘PACE trial’), which is cited as an example of bad science. In this study patients could get worse yet be classed as ‘recovered’. It is no basis for an ethical trial on children.

Exciting developments, such as appropriating cancer drugs, are showing good results for ME. Patients in this country want to see what little research money there is focused on well-designed biomedical studies, not another £1m of public money targeted at repetitive psychosocial trials.

Adults with ME feel that our views on these issues are usually ignored or caricatured. Children with ME have even less of a voice.

Find out more about the issues and petition Parliament about graded exercise therapy: www.stopGET.org.

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  • ME sufferer says:

    And the same people are involved with the supposed BioMedical Study MEGA. And wonder why we don’t trust them with it and would prefer less well known names who haven’t been involved in the Psych treatment research that always manages to make nil results or worse results look like its in their favour!

    We don’t trust them. And we don’t want them able to meddle in the very research that actually *can* help us instead of push more psych on us!

  • jimells says:

    Only a court judgement or jail time will put these people out of business. TEN YEARS AGO a report by the UK Parliament Group on Scientific Research into ME (The Gibson Inquiry) [1] stated:

    “CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies.”

    “[There are] numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.”

    Advocates have been doing their part for years. Competent researchers are finally making real progress. Now it’s time for the lawyers to step up to the plate and help obtain justice for patients and their families.

    [1] http://erythos.com/gibsonenquiry/Report.html

    • Jenny Horner says:

      ME and CFS show many biological abnormalities in appropriate research. It is not a psychosocial condition. The World Health Organisation defines ME as neurological.
      http://www.me-ireland.com/scientific.htm Has a good list of links to biological abnormality evidence

      People with ME are supportive and accepting of those with mental health difficulties. Some of us have comorbid, secondary depression/anxiety as a result of the toil chronic illness takes emotionally. When we object to psychosocial labelling it is because it is an error of misfiling. If you have a problem with your foot people would be sympathetic when you get frustrated by a referral to an Ear, Nose and Throat specialist.

      There’s a lot of scope for investigation here for journalists and lawyers interested in social justice and disability rights.

  • Robin says:

    To many vested interests have hijacked ME/CFS in the UK. Where is the objective outcome data? Kennedy defines recovery as a return to prior health, work social activities…..how does Bristol University define recovery? Like PACE? You can get worse be severely ill and counted as recovered.

  • Freda says:

    Will a free thinking journalist ever look at all the facts, the ease at which heart rate abnormalites, orthostatic intolerance, activity levels, temperature, volume of urine excreted per day, can be measured and question why they aren’t being measured. How can Bristol University carry out studies on children with a physical disease and not measure any changed in physical functional capacity? How can Bristol University advertise that its CFS clinic enables children to recover when it doesn’t even have a definition for what it means by recovery? Why are children with a physical disease being ONLY measured on subjective, mental health questionaires- especially when patients with CFS are known to over estimate their activity. Science? What science?

    • Jenny Horner says:

      This is a very good point Freda. Some objective tests are very easy and cheap to do yet this body of research doesn’t collect the data. Even at home many of us are using more advanced techniques such as heart rate monitors and pedometers.

      Patients are left feeling that CBT type intervention, with before and after questionnaires, is essentially just training to fill in the questionnaire differently. In other words a mixture of placebo and wanting to please the experimenter. Given this the results are actually surprisingly poor.

  • no more CBT please says:

    This is off piste a little, not about ME but about why I think CBT is the absolute worst.

    I got prescribed CBT to deal with my ‘severe anxiety and moderate depression’ last year and it was HORRIFIC. It made things so much worse. They kept giving me ‘homework’ (what part of my severe anxiety did they not understand?), refused to talk about how I actually felt and then discharged me from the service for missing 1 appointment. I missed it because I’d forgotten what day it was because, you know, I was depressed and was losing my memory and ability to process basic things. The rejection and sense of failure that caused was horrendous.

    • Jenny Horner says:

      Yes I think there are wider issues with CBT. It is a cheap, time limited option which makes it very popular in terms of cost cutting. It will help some people but it won’t help all.

  • Margaret says:

    According to the BMJ the entry criteria for MAGENTA is “CFS/ME is defined as ‘generalised fatigue, causing disruption of daily life, persisting after routine tests and investigations have failed to identify an obvious underlying “cause””. http://bmjopen.bmj.com/content/6/7/e011255.full
    Well that’s rubbish for starters. All ME criteria for ME for adults requires minimum six months of fatigue and several other debilitating symptoms from a selection of dozens and dozens. Most notably PEM. Without PEM the patient does not even have ME. All that describes is chronic fatigue the symptom, not even Chronic Fatigue Syndrome and definitely not ME. On that basis every single one of the participants in the trial could actually NOT even have CFS or ME.
    So what exactly is the point of the trial then?

    • Jenny Horner says:

      Yes it is possible (probably unlikely?) that none of the children on the trial actually have ME as it is usually defined. What is very concerning about this is the incidence of harm on the trial may be quite different from if children who have classic ME take the advice and try Graded Exercise Therapy. For example, depression fits the definition used and is much more frequent than ME. Plus graded exercise therapy could well be helpful for those with depression.

  • William A. Downey says:

    How can the child protection agencies in the UK remain inert, when children are being put at risk and/or actively harmed by “researchers” and “clinicians” who have no credible basis for their activities? How can child protection agencies ignore the very, very extensive library of sound, credible research on ME, not to mention current research developments? How can they sit by, allowing ACTIVE HARMING of children and youth, and take none of the precautionary and protective measures which are THEIR MANDATE? With this undertaking, Bristol University has allowed itself to become the laughingstock of the genuinely scientific community; however, the child protection agencies, by allowing the process, have exposed themselves to a massive liability for failure of their public duty. BRING ON THE LAWYERS!!!

    • Jenny Horner says:

      Well (this is a topic for an entire article) what happens when families try to refuse graded exercise therapy for their children because it has caused harm or they’re aware of potential harm? Some parents are taken to court for child protection proceedings. This is accusation of harm against the parents NOT the clinicians or researchers! See
      http://www.tymestrust.org/pdfs/falseallegations.pdf

  • Jenny Horner says:

    The Young ME Sufferers’ Trust has supported 153 families in this scenario and have just heard of a new case. It doesn’t end in prosecution, because the families aren’t abusive they are just resisting ‘treatment’ commonly perceived to be very risky by the ME community. In the meantime families are going through terrible unnecessary stress at a time when society should be supporting them.

    The Montgomery ruling should apply re graded exercise therapy:

    “The doctor is under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it” (1, para 87)

    Reasonable people with ME do think this risk is significant. Therefore new patients should be made aware of this and be genuinely free to refuse Graded Exercise Therapy without negative consequences.

    1. Full UK Supreme Court Judgement, UK Supreme Court documentation on Montgomery (Appellant) v Lanarkshire Health Board (Respondent) Case ID UKSC 2013/0136, 11th March 2015
    https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf

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