My letter on ME in today’s Telegraph

Means-testing pensioner benefits is a political rather than practical policy - Telegraph

I wrote the Telegraph a letter on Monday in response to Max Pemberton’s article on the issue of mental health stigma in ME (my blog response is here). You can find what they printed by following the above link, and scrolling down until you see “ME and mental health”. Alternatively, you can read what I wrote here. The gist of what I wrote did get through, but some details were left out.

Dear Sir,

Max Pemberton (Why few dare tackle the psychology of ME, today [Monday]) misses the point about why ME sufferers object to being called mentally ill. The reason has nothing to do with any stigma; the reason is that they are treated dismissively and because this presumption is widely blamed for holding up research into a viable treatment for the disease. The community is well aware that some mental illnesses are serious and neurologically-based, such as bipolar disorder and schizophrenia. ME patients are not treated as if they have this kind of illness, but as if their condition was a trivial psychological disorder and are wasting everyone’s valuable time.

The recent study he is referring to does not disprove all viral links to ME; it was only ever about one specific type of virus, the murine leukaemia viruses, the discovery of which raised a lot of (false) hope in the community in 2009 but has been widely abandoned. The community in fact largely welcome this study and the American researcher most heavily associated with the earlier study, Judy Mikovits, is among the named authors of this study. There are other viral connections that warrant investigation, particularly the Coxsackie B enterovirus which has significant epidemiological and recent virological evidence to link it to ME.

Yours faithfully,

Matthew J Smith

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  • Imraan

    A great piece, as always, Yusuf. Certaily, this sort of scaremongering does none of us any good; I know that if my family had taken any of this rhetoric seriously, I would never have gotten the care I needed.

    Though not the subject of your post, I might as well rant a little (!)…I’ve found the discourse to also favour the psycho-social model of M.E; as you will be well aware the Wessely school of thought warns patients to stay away from others suffering the same condition, that the disability is ‘learned’ and ‘encouraged’ by looking to others experiencing a similar plight; alas, this was very damaging in my life - it prevented me from being ‘allowed’ or helped to be registered as disabled, family pressure got quite severe - I was periodically subject to abuse for having to wear my sunglasses indoors (I still maintain that this intervention is what stops me having seizures regularly now, as well as makes it tolerable to do a few things from bed); life was made very difficult when it came to pass that I needed a wheelchair, when I could barely stand, let alone walk more than a few steps.

    I’m finding that this aspect of the discourse can be very harmful for patients. As yet, since there is no ‘magic cure’ to M.E, and certainly severe/very severe ME (I have fallen under both categories, though predominantly the former now), the interventions we feel we need to take are what help us to lead lives of better quality, if only from the bed-sofa; there are countless patients with whom I have spoken who have been subject to systematic abuse from family and friends (let alone healthcare practitioners, but you have done a good job of documenting how awfully such patients are treated by psychiatrists etc); alas, patients, particularly with a lower functional ability are especially vulnerable, and since, in many cases, the stress responses tend to be extreme, leading to adrenaline surges or an exacerbation of the worse symptoms as the HFME authors seem to document quite well - though I am a layperson in this regard - this kind of language (I would even call it abuse), makes the plight of M.E patients so much worse.

    But how does one address this when the medical establishment is so set against patients…?

    Finally, what do you make of comparisons made by various researchers (I think commonly attributed to Loveless, Hooper, Marshall) likening the disability faced by M.E patients to end-stage AIDS - sometimes I wish that M.E could be taken seriously on its own terms, though the grim likening sometimes can help make a key point. But I never know if this is unfair to AIDS patients…