Tuesday, 7 December 2010

A brilliant response by Dr John Greensmith

I'm glad I didn't see the Yvette Cooper interview in Saturday's Guardian, it would've made me mad. Via Dr Speedy I have come across Dr John Greensmith's response to this interview, specifically, to Cooper's assertion that her consultant claimed '90% of people with ME make full recoveries'. As I said over at Dr Speedy's, I suspect this consultant is living in a parallel universe - and I am always suspicious of former ME sufferers who speak so blithely about recovery. Dr Greensmith's hits the nail on the head with sublime accuracy, highlighting the confusion between true neurological illness (ME) and chronic fatigue (CFS/ME) - 'a fudged collective diagnostic term'.

*Update: This correction by Yvette Cooper's consultant has been pointed out to me by another blogger. Dr Weir is understandably concerned that he has been misquoted by Yvette.

** Guardian has printed correction here.


Stray said...

I can understand why it bothers you, but the same is true for so many chronic illnesses / conditions... particularly ones that have some roots in inflammation.

I'm very, very much against all the mumbo jumbo that doctors talk about ME being psychological etc, but it strikes me as a truth of any chronic condition that there will be some people who have it worse than others and some people who go into a remission that may last most of a lifetime.

Even if you take something irrefutably organic in its basis - such as cancer or stroke - the picture a year or two after onset can be anything between death and near-complete recovery. Does that mean that the person who recovers most functionality didn't really have a stroke, or doesn't still have brain damage?

I don't think it does - I think it just means that our bodies are incredibly complex, have many different ways of healing or working around a problem, and - regardless of attitude and aptitude - no two people suffer and/or recover in the same way.

I thought of you in the moment that I read those words in the article, and wondered what reaction they would provoke. Personally I didn't find anything dismissive in it. I heard her speak recently at a women's labour event - she was talking about proposed cuts to benefits for disabled people etc and referred very seriously to her ME and the fact that she was lucky to bounce back relatively quickly.

I think that, in itself, speaks volumes. Most people would see a lost year as a terribly long illness. She clearly saw herself as fortunate that she recovered, and is concerned about what the changes to DLA and assessments etc are going to do to other people with chronic ill health.

She's on your side.

nmj said...

Stray, I was not at the women's labour event, so I only have this article to go on (though I have elsewhere on my blog linked to a very good description of ME that Yvette Cooper wrote in the 1990s).

This is not about varying degrees of the illness, it is clear that there are very different levels of disability, you don't have to tell me that. I have experienced profound fluctuations since 1983, never getting beyond a certain point. This is about a consultant saying that 90% of pwme make full recoveries, which is patently nonsense. Why make such dubious assertions? And Cooper seems to be backing that assertion in an effort to cheer us all up. It is naive.

This is also about the neurological illness ME being hijacked, I don't think you truly understand that or you would understand my concern. People who don't have ME are being diagnosed with it - it is muddying the waters. The muddying has been enshrined in the NICE legislation. I really don't want to go over all the old ground again here.

Yes, a year lost is a terribly long time, but that is all she lost. She can't honestly understand ten, twenty, or thirty years lost. We are not in her consultant's magic 90%.

The problem is there is so much nonsense peddled about ME by the psychiatric lobby - not that she is part of that - and when an article like this appears, people then think oh, you get over that, you'll make a full recovery. That is why Dr Greensmith's letter is so important. Relapse is the norm in neuro-ME, not recovery.

At the end of the day, we can, all of us only know our own illness, you can't truly understand mild unless you are mild, you can't understand moderate unless you are moderate, you can't understand severe unless you are severe. But blithe, throwaway comments are simply damaging to the crediblity of ME. And I will fight them all the way.

Cusp said...

Well said Nasim

nmj said...

Thanks, Cusp....Maybe if they had not fannied around for the past 30 years, and actually done some decent government-led biomedical research, we *would* be making full recoveries.

Today, I realised just how very tired I am of talking about ME, and I think I am going to stop for a while. If I see anything that peeves me I will just put up a link. And I will have a new post category - NONSENSE BOX - and leave it that. Everyone else can discuss and comment but I feel I am kind of burnt out with my commentary, there are other things I would much rather talk about.

vw said...

Nasim I came across this


nmj said...

Thanks, Vikki, this is great! A shame Yvette got so confused, you'd think she'd be more careful about what she said... Glad the consultant is so vigilant, good for him!

Susannah said...

Nasim, I so understand your feeling burnt out by M.E. politics. Until very recently I felt very much the same, and even stopped following what was going on to a larger extent. Since I've been reading and getting involved a bit more again, I've found it frustrating, upsetting, and rather too close to hopeless. It feels rather like banging my head against a brick wall. I also found some personal hope just in connecting with other people though, so for now, I think that's enough to prevent burning out.

This situation is just intolerable for everyone living with it. Something that strikes me as really sad is that so many people living with this illness aren't even aware how many lies are being fed to them - and certainly most family and friends have no idea. (Stray, this is part of our problem as people with M.E. - that there is so much false information in the media about M.E., that our friends and families barely have a hope of really understanding - and so we lose support because of it. I've tried explaining things to my mum, but although she tries, she really doesn't get it. I think you actually have to do quite a lot of reading on the subject to be able to have a real understanding of it.)

Nasim, just look after yourself, hon. Be where ya need to be!

nmj said...

Hey Susannah, In 80s I was very involved in latest goings-ons in ME world as I was still 'newly' diagnosed (as you know, in terms of ME, 5 or so years is still 'new')! In 90s I took a back seat, i was just trying to get on with life as best I could. After my book came out I got quite involved again, it is is hard not to be pulled back in, but I do feel pretty burnt out. As I said recently you can't possibly challenge every dumb thing written about ME but some things *must* be challenged, such as an MP/former sufferer talking bollocks. Thankfully, her consultant saw that his words had been muddled. '90% of people who recover fully, tending to do so in the first year', is very different from '90% of PWME making full recoveries'! I wonder how Yvette Cooper could have been so careless - assuming she did say this and not a journalist's error.

Susannah said...

Hey. :)

I think a lot of people who are diagnosed with M.E. and subsequently 'recover' relatively quickly (relatively compared to those of us who never really do) really do believe that that is the norm. And of course part of the problem in that is that they themselves then in a way add to the propaganda of the psychiatric models, because people start to believe that well, if some can recover, all can, and maybe they're just not trying hard enough.

God, if only those people knew how hard I've tried - how hard we all try, us A-type personalities who work ourselves into the ground given half a chance.

Something that worries me too is that the people believing they are fully recovered may not be - may just be a remission stage, albeit a long one. And if they believe they're fully recovered, then they might start pushing themselves too hard again and land on their butts as a result. Stupid state of affairs.

Yep, it's hard not to get pulled in. When something affects you (and people you care about) so much, I guess it's natural instinct to do whatever you can.

For what it's worth, in my opinion you've made a valuable contribution, something that was an important 'play' in this game of chess we seem to have got entangled in. Whether you take a break from it all or not, that's a lasting effect! :)

nmj said...

Thanks, Susannah, sometimes I feel I am just preaching to the converted. My blog is important as a platform as I am not able to function as a 'normal' writer, steadily producing more books, so I like it to reflect my voice in general, but maybe less ME stuff for a while is a good idea.

Susannah said...

I hear ya! I have a vent on facebook every now and then and I have to admit it's almost always people who have M.E. or similar conditions, and feel the same way, who reply. But then I guess at least some other people (hopefully) are reading and hearing something different from what the media portrays even if they don't care enough to reply lol.