XMRV is not the only virus

Picture of Emily Collingridge, a white woman lying on her side in a hospital bed covered in white sheets. She has an obviously distressed look on her face/ME is probably a mental illness after all - but that does not mean that it is not real - Mail Online - Michael Hanlon’s Science blog: From The Cutting Edge

This is one of the most ridiculous articles on ME I’ve ever read. It’s about the recently published Lipkin study, which disproved the link between the XMRV retrovirus (Xenotropic Murine Leukaemia Virus-related Virus) and an ME-like illness that had been ‘discovered’ in 2009. This article goes off on a tangent about hysterical ME “fanatics” threatening scientists and comparing them to Nazi war criminals. He also mentions a study last year that supposedly found that “a series of therapies, including exercise and cognitive behavioural therapy could be highly effective against ME - suggesting of course that this was primarily a mental problem not a physical disease”, and claims that Simon Wessely was involved in that. In fact, he was not.

The author claims that the Lipkin study demonstrates that “whatever the cause, it is not a virus” and supposes that “perhaps now the final nail in the coffin of the virus theory appears to have been driven home, we will find out once and for all the true story behind the ME fanatics”. However, the study does not disprove the idea that a virus causes ME, nor claims to; the investigation was solely into one type of retrovirus. It did not investigate the role of any other type of virus, including the enterovirus, which has substantial epidemiological evidence supporting it as the cause of ME and particularly epidemic ME.

Also, once again the coverage cannot resist the “sleepy model” stock pictures (in this case, a man in a blue pyjama top lying on white sheets, as ever bathed in light that would cause a real ME sufferer agony). The picture accompanying this shows a real ME sufferer, Emily Collingridge, who died six months ago today, from complications of ME. She describes her condition, which towards the end was one of the most extreme examples of physical suffering ever recorded, in this article and in an appeal for better research from May 2011 (reproduced on this site among many other places). The Lipkin study should mark a point where better quality medical research takes over, and the coincidental six-month mark since Emily’s death should be a reminder of the need for better care for the severely affected — not an upsurge in propaganda against patients, denying that their illness has any physical basis.

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  • Imraan

    This is rather absurd. Let us take them at face value - is it psychiatric?

    And if so, how many psychiatric diseases caused by say a viral infection (do such things exist?) do you treat with Exercise Therapy? This doesn’t strike me as the conventional approach, even though conventional psychiatric jargon is thrown at us.

    I don’t know if you can exercise away Autism (another unfairly treated condition), schizophrenia, bipolar disorder….

    I recall one doctor (a cardiologist whose previous specialism was in neurology) tell me that I had developed ‘sickness syndrome’ [?!] because I couldn’t leave the house at the time and thus had friends visit me at home every few weeks. As far as I’m concerned, that is just abuse. Thankfully, I didn’t heed his advice for strenuous rehabilitation and am slowly improving with very, very gentle physiotherapy and practise at sitting up, and in so doing, have not exacerbated the symptoms like seizures, paralysis, and the heightened sensitivities (I guess the more ‘severe’ or unheard-of symptoms, at least in the public consciousness).

  • Imraan

    …Oops, didn’t finish. In addition to ‘aggressive rest therapy’, nutrition, supplementation (especially magnesium, Vitamins C and D) which really helped - I dind’t realise how important that stuff was until I became severely affected myself - other patients tell me that this has essentially saved them from their very worst - though not all - others, like poor Emily suffered right ‘til the very end, alas.)

    When I relapsed I was taken to see the consultant who had diagnosed me with M.E - his specialism was infectious diseases and tropical medicine - so I expected that he’d at least know more than my GP about it all - alas, he’d never seen a ‘severe’ case before (I was gobsmacked since maybe 1 in 4 patients, and I suspect at times this is unreported) do fall into that territory.

    He promptly insisted I increase the dose of the amitriptyline I was on as part of the ‘standard’ treatment protocol for ‘C.F.S’ (I ended up in a dangerous dose - which helped my pain no -end but was then promptly taken off it when further cardiac problems came into effect, which were already extant as a result of the relapse).

    Seriously, the only things that seem to have helped someone like me were the above. I had in the past been in a C.F.S psycho-educational group therapy programme when I was well enough to attend, but the exertion that I had to endure did set me back (both in terms of neurological problems and immune health) which probably exacerbated the relapse some months later.

    But who’s to say. Maybe I’m hysterical?!

  • Olana

    A friend pointed me to your blog piece as a suggestion that I blog it myself. I think you’ve pretty much covered it though. That article was disgusting. I think the journalist deliberatly made it so though. He was deliberatly seeking to stoke the fire he stoked before. Did you notice that at the end of the article he said he’d have liked to champion our cause? I would actually love for him to do that. I don’t think it would take long for someone taking a serious interest in M.E. to reliase that it isn’t psychological - you know, actually dealing with M.E. patients on a daily basis. And did you read the comments? Not a single one sided with him that I read.

  • Olana

    Imraan, exercise is actually a common treatment for depression. Exercising triggers hormones that make people feel better, and can help with serotonin production too. Unfortunatly, a common assumption by ‘doctors’ is that M.E. is a physical manifestation of depression, which is where the notion of exercise as treatment came from. Graded … because it is clear that people in our condition cannot do the level of exercise a standard patient would do, so they tell us to build up to it. I having nothing nice to say to such doctors.