The walking dead arise!

It’s been a while, and this isn’t the post I intended to write, but at least I have a topic.

On Friday 29th July the morning BBC radio news reported that Professor Simon Wessely, seen by many ME/CFS sufferers in a less favourable light than, say, Jason Voorhees, was being interviewed telling the nation about the threats him and his colleagues have allegedly received from ME/CFS sufferers. This was followed up by a couple of articles on the BBC’s website.

Then the Observer of Sunday 21st August had essentially the same story, brave researchers stifled by “a campaign of abuse and violence” from ME/CFS militants violently opposed to the notion that their illness is psychological.

Now the first thing that springs to mind is this notion of vicious ME/CFS militants. Remember, this illness is characterised by a lack of energy, as well as cognitive dysfunction yet they are portrayed as “as dangerous and uncompromising as animal rights activists”.

Now that’s one hell of a claim. So I read on to see details of police investigations and arrests made of these terrorists. Neither the Observer article nor the BBC Website detail any such arrest or indeed any investigation. I did a, brief, Google search and nothing turned up.

I think at this point a bit of clarity is required, because you will find none from the Observer or the BBC. At present the only treatments offered by the NHS in England (Scotland has a separate system) are psychological. Moreover, the only projects currently receiving funding by the Medical Research Council are Psychological. No Biomedial research is being funded.

This is odd by international standards as ME/CFS is accepted to be neurological by, amongst others, the World Health Organisation (ICD G93.3) and the NHS in Scotland. I am not saying an ME sufferer might not require some psychological support, it’s a terrible thing to have and to try and cope with, but NO BIOMEDICAL RESEARCH IS BEING FUNDED BY THE MRC.

This classification of MC/CFS as neurological is not some new thing that NICE and NHS in England have yet to catch up on, it has classified that way since 1969, before Dr. Wessely’s time at least.

Since 1992, however, diagnostic guidance in England has been that this ailment is purely psychological, which means that the symptoms are not to be “legitimised”, i.e. it is all in the sufferer’s head and the doctor should not say or do anything that gives the impression that the effects are anything other than psychosomatic and therefore if the patient can be induced to “pull themselves together” then all will be well.

In Scotland they use what is referred to as the “Canadian Criteria” stemming from work that led to an article in the Journal of Internal Medicine and subsequently refined. This considers ME/CFS to be a physiological condition and the psychological treatments used buy the NHS in England to be of limited benefit if not harmful. These criteria were drawn up in 2003, so again this is not some new thing to which the NHS in England has not had time to respond.

This means that, if International opinion is correct, then sufferers in England are not only being treated as if they are, in effect, fantasists, but also the only treatment they are being offered is potentially harmful.

Neither the BBC nor the Observer offer any of this as background, only the image of a few researchers, from the psychiatric point of view, as lone seekers of truth was presented.

The English diagnostic criteria, the Oxford criteria, were born of psychiatry and remain rooted there, and I should explain the conspiracy theory alluded to, incorrectly, by Dr Wessely in the Observer article.

Wessely explains the theory as a stitch up by drug companies, so the theory can be ridiculed because, if it was then the drug companies would make money from it. The theory is, however, slightly different. If ME/CFS is a psychiatric illness then, in a system of private health insurance, it would be exempt from having to pay for treatment or would have to pay at a lesser rate. Simon Wessely is a key figure in the psychiatric approach to ME/CFS and has spoken at events sponsored by Private Health companies and been an advisor for private health companies.

One of the companies Simon Wessely has had a relationship with, Unum. In its parent country, the United States, Unum has been investigated for having a quota for closing claims with no payment and a former California Insurance Commissioner described them as “an outlaw company. it is a company that for years has operated in an illegal fashion”

Given this and other snippets, and the involvement of Unum in both Labour and Conservative policies for Health and Welfare reform, Simon Wessely’s relationship with private health organisations is perceived to be indicative of a motive for keeping ME/CFS classified as a psychiatric illness, thus no payments, rather than a physiological illness, for which treatment would have to be paid for.

It would seem though that Simon Wessely preemptive retaliation has been successful. He is perceived by many now to be the victim of a shadowy cabal of ME/CFS activists. Moreover, instead of journalists focussing on why HE and others are so adamantly opposed to the possibility of ME/CFS having an, internationally accepted, physiological cause, they have to defend themselves against charges of being opposed to the psychological option instead of the situation they really find themselves in, fighting a system that only allows for psychological treatment.

Balance in reporting doesn’t necessarily mean you get equal coverage and your P.O.V. is treated as equally valid, it might mean only that claims are verified and facts checked. If crimes had been committed it does not mean a right to have part of the piece say you were justified, but part at least should be devoted to investigating if the crime actually occurred.

Neither Tom Feilden of the BBC nor Robin McKie of The Observer seem to have approached any ME organisation for comment, nor is there any sign of investigating the claims made. Newspapers can get away with being unbalanced, the BBC is supposed to at least provide lip service to balance.

So what is it, old age or the lurgi?

It’s something that comes up every so often even if the magic wand was waved and a cure came tomorrow, Mrs Spoonbill is not in the first flush of youth. So, unless that cure could give her 25 years back, she’s stuck with being less capable than she remembers.

On the plus side though, soon she will be forgetting how capable she used to be, so problem solved!

Seriously though, there are quite a few folk in positions of responsibility who would like to claim that amnesia regarding the sick. Next blog post I’ll start addressing that. It’s not just hard for a Spoonie to live within their capabilities, there are plenty of folk outside live vying with each other to make their lives even harder!

Unfortunately, a lot of them are in Government.

So, what’s it like living with a Spoonie?

Generally, like living with anyone else. Just because someone can be categorised, no matter with how much good humour or gentle ribbing, doesn’t make them easier to predict or to know.

That piece of obviousness out of the way, it is not easy, if for no other reason that it is impossible, no matter how considerate you try to be, no matter how much you care, you occasionally forget, don’t take that extra step you need to to make your other half’s life easier or a bit more normal, and you can end up hurting them. So they feel bad, you feel bad and it’s a bit of a downer.

Because it is non obvious, so strangers can’t tell, living in the outside world, even a short stroll to nearby shops, can be made harder than it already is. It is hard because of the energy and pain that the person has to endure to make the effort, but unless there is a visual cue, like a walking stick or crutches, other people don’t make allowances and the ill person expends yet more energy coping. And who can blame your other half for wanting a normal life, for not wanting to appear out of the ordinary, for wanting as normal a life as possible.

It’s hard to make plans, as you can’t guarantee if, on the day, they will feel up to it. Or they go, but run out of energy. It’s hard to keep up friendships under those conditions, and family start to think you are avoiding them. It can also be hard for family and friends to understand what is going on. They see the person at their best when they are making extra effort to be involved and keep up. They don’t see the days of recuperation afterwards. The ill person can try to save up spoons in advance, but it rarely works that way. The best they can do is not be in a position of recuperating before the event.

Life may not make that possible. If you don’t live in some extended commune of family and friends, and can’t afford home helps or what have you, then real life kind of gets in the road, and the perfect rest can’t happen and, again, the person wants as normal a life as it can be. Can’t have that living in a bubble.

First POST! Oh, wait

I don’t suppose it counts as any kind of achievement to have the first post on a new blog, but you take them where you get them.

I should start with a definition of the term “Spoonie”

There are people who are sick, in cases severely sick but who look perfectly normal. A lot of sufferers from, for example, fibromyalgia would come into that. Often these people have limited energy, and managing that is a bit of a bugger. Explaining it is also not easy. Enter – Christine Miserandino who found explaining her illness and how she coped hard, until she explained it in terms of having a number of “Spoons” to use each day

You can read about that here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Basically units of energy are equated to spoons. Some days you have more spoons than other days, but ultimately you use a spoon and it is gone. It’s a good way to help pacing

People who have to think in these terms have started to adopt “Spoonie” as a catch-all to describe themselves, you can see them on Twitter at #spoonie.

So. I am married to a nice person who has ME/CFS. Prime Spoonie material.

Spoonies dont get a lot of respect in the world, from Press and Government. Often they are characterised as shirkers, malingerers or fantasists. If you are ill then you can see how this really helps. Often this lazy stereotyping holds a darker political agenda to cut funds spend on health.

The blog, irregular as it may be, will be me charting the experiences of living with a “Spoonie” and the difficulties they face