Positive Health Online

At this moment, I am struggling with at least three themes: Getting ‘rest’ recognized as ‘treatment’, getting the influence of certain psychiatrists recognized as part of our society’s tendency to reward sociopathic behaviour, and wanting to help the conscientious and highly moral ME/CFS population learn how to be a bit more like them.

There has been much news in the past year about research advances in understanding biomedical aspects of ME/CFS. The Invest in ME annual conference in London (which, BTW, is never mentioned by the mainstream media), and the spring conference at Stanford Medical School (one of the most prestigious in the USA) reported significant advances. At the same time, Queen Mary University of London continued to resist FOI requests for data about harms in connection with the PACE Trial, which purported to demonstrate the superiority of CBT and GET over other treatment approaches for ME/CFS. (This result was achieved through the simple device of lowering the criteria for recovery to just slightly below the criteria for being sick enough to enter the trial. This meant that you could get a bit sicker during the treatment and still be recorded as ‘recovered’. Besides, results were also based on ‘self-reports’ of improvement, and you wouldn't want to hurt their feelings by telling them you'd got worse, would you.)

Ramsay and Acheson both were unambiguous in asserting that complete rest, from the beginning of the illness, gave the best prognosis, and at that time, many apparently, did experience good recovery. But in the current situation, in which a diagnosis cannot be given unless the sufferer has been ill for months, recovery is rare to non-existent. In the contemporary medical canon, rest is to be resisted as far as possible. The NICE Guidelines for ME/CFS give ‘increasing activity levels’ as the goal of treatment – no mention of ‘curing the illness’.  So, no research projects on rest as a treatment…after all, who would make any money out of that?

Moving swiftly onward, Stanford helpfully made audio recordings of their sessions available online, including a lunchtime session in which journalists were talking about how ME/CFS is treated by the media. Remember Sophia Mirza? She became the first person in the UK to have her death recorded as caused by ME, after her mother managed to have a second autopsy done, which showed spinal-cord lesions consistent with her symptoms. This presumably, puts paid to the concept of ME/CFS as a psychiatric, or ‘functional’ disorder, and would result in this view being discredited. The psychiatrists would be dismissed, and proper medical research funded. What happened? According to someone in this lunchtime session, the doctor who performed the second autopsy lost his job, was unable to work in the UK again, and had to go abroad.

Another speaker described a speech he had attended in Canada, fifteen years earlier, given by Simon Wesseley. It was delivered to a group of doctors and representatives of medical insurers, on the subject of ME/CFS, and he said that Wesseley was such an accomplished comedian that his impersonation of ME/CFS patients had the audience in paroxysms of laughter. The following day, every ME/CFS patient in British Columbia received notification that their disability payments were cancelled.

I looked up the DSM 5 definition for sociopath/psychopath, expecting to find the familiar list - ruthless pursuit of own desires by any means, lack of ability to empathize, use of others as a tool for gaining own ends, rather than as human beings, along with charm, charisma, being a convincing liar etc. What I found was that these categories now are subsumed into the heading ‘antisocial behaviour disorders’, and feature behaviour which is ‘not accepted by one's culture’. So if one’s culture encourages and rewards these qualities and behaviours, you can't call it a disorder. And if one’s culture has this encouragement deeply embedded, probably not illegal, either. Perhaps not even regarded as immoral. Perhaps you can even get a knighthood.

In the meantime, I've joined a number of Facebook advocacy and support groups which have to do with ME/CFS, and find them both depressing and very heartening. It seems that PWME [People with ME] especially women, tend to struggle on, trying to fulfil family responsibilities, make as few demands as possible on others, pretend to be better than they are to save others social embarrassment, and are very vulnerable to criticisms that they aren't doing enough/trying hard enough. Fortunately, on Facebook, they are likely to encounter a barrage of supportive and sympathetic messages….which makes me feel really concerned for the thousands of sufferers who don't access this type of support, but are struggling in isolation.

In your encounters with doctors and consultants, do you ever wonder if medical school actually gives classes in arrogance and insensitivity? (I feel sorry for the ones who are sympathetic, as they must be swamped with albeit grateful patients, along with lack of support from their colleagues…another story.) I think it is about time that we had classes in selfishness and insensitivity for patients. For the best of reasons - if we want to have any chance at all of improvement, of getting better, right now we have to learn from the psychopaths. Our culture wants women not so much to ‘have it all’ as to ‘do it all’. Did you know that Shirley Conran, after she wrote her seminal book on being ‘Superwoman’, had a marriage break-up, and got ME? There's a lesson in that somewhere - not a very widely publicised one. But maybe she is a good example - she is famous for saying that ‘life is too short to stuff mushrooms’, and the title of a sequel includes ‘For Women Who Hate Housework’.

Somehow, we need to become ‘selfish’ enough to claim the right to a lifestyle that can allow us to recover. This includes the right to many hours of complete rest, to physical help from those who aren't ill, to every labour-saving gadget and technique known to man, to letting the people In the bank, supermarket, doctors office know that we need to sit down. Stop peeling potatoes! It's not even good for you, the skin is roughage, and contains the Vitamin C. It is character-building for children to take responsibility. Use your charisma and charm to make pushing your wheelchair into an exciting adventure. We are accused of being drama queens, exaggerating our symptoms. Fine, go for it - If drama is what it takes for us to get the help we actually do need, hone your skills – get very good at it.

Service to others, generosity, kindness, are all rumoured to hasten ones progress to heaven. Having ME/CFS puts us in a position to assist many people in their path of good works – giving them an opportunity for good deeds is doing them a favour. Treating us badly, on the other hand, is bad for them..we owe it to them not to allow this.

Oh, wait a minute, isn't it us who are supposed to be doing the good deeds? Well, not necessarily ….right now we need to give others the chance!