Tag Archive | SEID

How bad science misled chronic fatigue syndrome patients

I get all my medical news from twitter, and I haven’t been on for a while (because typing on an android screen keyboard is too much like hard work when your hands and wrists have no strength), so I missed the news that Wellesley’s team had been forced by court order to release the data from their faudulent pace study earlier this year – Thank-you to everyone that made that happen. Full details in the article below.https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

As everyone was agreeing on twitter when I looked last night, it’s about time to hear some very loud apologies from journalists, the medical establishment, and especially Simon Wellesley himself. But we won’t be holding our breath.

My question now is, when so much evidence was already out there, and every other medical authority – including the World Health Organisation – agree that ME is a neurological disorder with a possible viral component, how on earth did the UK allow psychiatry, of all the inappropriate disciplines, to take over our ‘care’ at all, ever, in the first place, let alone for so long. And when will they finally be kicked off the case? It would be difficult to find any doctor, team, study, or discipline more thoroughly discredited.

May 12th International ME Awareness Day

I had planned to write my own post and draw together good and helpful links, posts and videos for International ME Awareness Day, but I seem to be having a bit of a bad patch and I have already run out of ‘spoons’ today.

So in the meantime, I am sure you will enjoy this post with beautiful paintings depitcting some of the various stages of ME/cfs.

http://glutenfreeadventuresandme.co.uk/2015/05/12/the-corrupted-part-1/

Grumbles

Just a quick (ok less quick as it turns out) grumble. I’m still clearing out our old house and trying to clean the darn thing.

We have had the de-humidifier going non-stop for three weeks, and some of the more disgusting black mold has disappeared, but I just feel incensed that we have had to live in these awful places, and that our scumbag landlord would add insult to repeated injury by turfing us out on our ear for profit.

I sat in the garden yesterday, looking at the beautiful view of fields and the sea, and just wept thinking about the place we are moving to, with a sorry excuse for a tiny garden with 6 foot high fences and a view of a shed. Ok, we’re escaping the mold, and our tenancy should be safer now as it’s no longer private renting, but it’s not a clear improvement by any means.

My mum keeps calling to say first one day that she’s desperately unhappy and can’t cope with living alone and wants to come and live with us (so can we get the ‘spare’ room ready for her), and then the next day that she doesn’t want to leave London and would rather live near my brother. I’m sure she can’t help it, but it’s relentless and feels like emotional torture.

Also, about three weeks ago I wrote to the Church hierarchy with an update confirming that, after my year of waiting, I was still interested in ordination. I still have yet to receive any kind of acknowledgement at all despite specifically requesting one. In the meantime, I sent details of an online course to the same person that I thought might be interesting. Bearing in mind that I wasn’t asking for the church to pay for the course, the fact that I received a very terse response “NO” within five minutes felt like a big slap in the face with a wet fish.

Frankly, I’m no longer sure that I want to be connected with an organisation that treats people so rudely.

And then finally, and no doubt due to the amount of stress I’ve been under, I’m experiencing what feels like the beginning of another relapse – all my lymph nodes are swollen, my throat is sore, my head, back, neck and spine are tender and my arms and legs are achy and weak, so I am having to take it easy and move slowly to hopefully ward it off. Last night I went to bed around 9pm, slept round the clock, and woke up with a migraine. The washing, and washing up are piling up around me and I can’t do anything about it.

A New Name for ME: Good for us or bad for us?

ME, commonly confused with and lumped together with the unexplained chronic fatigue of ‘Chronic Fatigue Syndrome’ – primarily by the NHS – has a rather amusingly large number of hashtags on twitter: #ME (obviously), #MEcfs, #cfsME, #CFIDS (Chronic fatgue / immune deficiency syndrome), #MyalgicE, #MyalgicEncephalomyelitis, #Spoonie even, and now we can add the new hashtag #SEID.

SEID is the new name that the American ‘Institute of Medicine’ has given to the condition, christening it ‘Systemic Exertional Intolerance Disease’.

There are several things to note about this – please add your own thoughts as well, as I am sure I have missed plenty that could be said about this.

Improvement:

– Replacing ‘syndrome’ with ‘disease’ sounds like an improvement: ‘syndrome’ suggests an unknown collection of symptoms that fit loosely together but the connection between those symptoms may or may not be relevant. ‘Disease’ makes it sound a little bit more of a legitimate illness, recognised to be one coherent whole. Perhaps.

– The word ‘systemic’ is helpful in that it seems to acknowledge that whatever is causing the symptoms is affecting the whole body (although that’s not at all obvious in the diagnostic criteria).

– The removal of the word ‘fatigue’ is helpful since, although fatigue is often a core symptom, concentrating on fatigue has masked all else. For many, pain is a much more pressing issue than fatigue.

– Emphasising ‘exertion intolerance’, or ‘post-exertional malaise’ should now put paid to the dreadful PACE trial, CBT and GET – all of which are known to worsen symptoms in patients with ME (as opposed to any other type of chronic fatigue of unknown cause).

Steps Backward?

There are several things I am confused about and concerned about, which may well represent steps backward and put patients with ME in more danger of misdiagnosis and inappropriate treatment:

– The new proposed diagnostic criteria mention nothing of pain – as previously mentioned, for many people fatigue is much less of an issue than pain. For myself and many others, this pain is not a result of exertion at all, I am simply in constant pain.

– The new name and diagnostic criteria do nothing to address the cause of the condition. Even ‘Post-viral fatigue’ was a better name in that regard. The fact that the diagnostic criteria are so broad (and despite removing the word ‘fatigue’ actually still seem to actually focus on fatigue / post-exertional malaise) and remove such core symptoms as sore throat, flu-like pain, and cognitive / neuro symptoms, may actually make finding a cause more difficult, and it will almost certainly make finding funding for research focused on the missed symptoms more difficult.

– The WHO (World Health Organisation) already has an agreed definition for ME and categorises it as a neurological condition under ‘disorders of the brain’. Who are the IOM to redefine the condition? (Who are the NHS, for that matter to disagree with the WHO?) See the Action for ME document which details the WHO definition and others.

It has been suggested that the whole SEID renaming and re-framing may actually be a Trojan Horse. I’m sorry to say I can well believe it. Inevitably the infamous psychiatrist, Simon Wessely has been asked to comment on the change of name and diagnostic criteria, and according to the article in New Scientist, he ‘welcomes’ the change. That does very little to reassure me that SEID will be any kind of improvement over CFS.

I’m concerned it may add to, not reduce, confusion around this condition,” he says. I never thought I would agree with such a man (who, since it is nowhere legitimately defined as a psychiatric condition, really should not even be asked.) But there we are. We’ll have to watch and see how this impacts us.