Last night I saw via ME Association that the long-awaited Scottish Good Practice Statement on ME-CFS were available online. I quickly scanned the guidelines, they look better than the NICE nonsense, but I still have to read them in detail. I was thinking, thank God I live in Scotland. Then I did a little googling and was chilled to discover how the process had almost been hijacked by so-called ME 'experts' neuropsychiatrist Dr Alan Carson and GP Dr Clare Gerada (who just happens to be married to Simon Wessely). This no doubt explains why her hugely ignorant comments read like propaganda. Neither Carson nor Gerada have published anything on ME before. Serious concerns about the final draft document not being fit for purpose were submitted to Nicola Sturgeon by patient/carers group in July. I'd like to know why the hell consultant neurologist Dr Abhijit Chaudhuri was not consulted about the guidelines? He is one of the few UK experts in ME, he took over from Professor Behan, who diagnosed me in 1984. But no, we have Dr Carson, who - silly billy! - admitted at one stage to confusing 'chronic fatigue' with 'chronic fatigue syndrome'. Chronic fatigue is categorised by WHO under ICD-48 as 'a mental and behavioural disorder', whereas 'chronic fatigue syndrome' (or ME, its real name) is categorised under ICD-G93.3 as 'a neurological disorder'. Just a wee bit different. I'm almost scared to read the guidelines now and I didn't sleep well, thinking of these scary, blinkered medics yet again putting their oars in. You have to wonder how ignorance comes so easily (and wilfully) to supposedly intelligent health professionals. If anyone reads the guidelines before me and finds good things, please let me know. Maybe we'll be pleasantly surprised.
ME Association's initial response to SGPS:
*update, August 2017: Unfortunately the links to Cathcart ME Support Group regarding inputs of Doctors Carson and Gerada are now broken. For some more background, Dr Carson trained under Michael Sharpe and appears to still think PACE is a good trial. Dr Gerada thinks it is *nihilistic* to describe ME as neurological as patients will then think they have a neurological illness and won't get better. I paraphrase, but you get the gist.
ME Association's initial response to SGPS:
...However, the very things which had originally been seen as necessary to avoid, had now became entrenched in this review – the dilution of recognition of ME compared to CFS, and the process-driven evaluation of ‘evidence’ with the inevitable devaluation of long-developed clinical understanding compared to often poor-quality CFS research findings...
*update, August 2017: Unfortunately the links to Cathcart ME Support Group regarding inputs of Doctors Carson and Gerada are now broken. For some more background, Dr Carson trained under Michael Sharpe and appears to still think PACE is a good trial. Dr Gerada thinks it is *nihilistic* to describe ME as neurological as patients will then think they have a neurological illness and won't get better. I paraphrase, but you get the gist.
8 comments:
Goodness, her comments give me rage.
The fundamental problem remains, that there isn't even a common agreement about what particular illness/difficulties/symptom set is being described.
She seems to fatally misunderstand the difference between a sore ankle that can be run off and a sore ankle that is fractured and will be worsened by running. Most sore ankles can be run off. That doesn't mean nobody with a sore ankle has a broken ankle.
It especially doesn't mean that the Scottish equivalent of Nice are doing a disservice to people with sore ankles by advising six-weeks in a plaster cast for anyone with a broken ankle, and x-rays for those with sore ankles that don't heal on their own pretty quickly.
It's not that different to the situation with Autism/Tourettes etc. Girls don't get autism. So Drs don't diagnose girls with autistic-type difficulties with autism. So the diagnosed population is predominantly male. So girls don't really get autism. Argh!
The patronising tone of her letter suggests that she believes that the guidelines are being implemented by anyone with a brownie badge in First Aid rather than a body of well trained health professionals.
I'd never heard of her and got so angry reading her comments - so disrespectful and arrogant, spouting nonsense. When I googled her and found out she was married to Wessely, it all made sense. She patently doesn't know what she's talking about, and she is a danger to anyone with ME - why was she ever consulted on these crucially important guidelines in the first place? Apart from anything else, as has been pointed out - she practices in England, these guidelines are for Scotland. The patient group had this to say in their letter to Nicola Sturgeon in July:
*Unscientific weighting of professional opinions*
'It is of grave concern that the letter of comment to the Peer Review Group by Dr Gerada, which carries no supporting evidence, appears to have been given substantial weight in the process. This is in stark contrast to the low weight given to views expressed by patient and carer representatives within Scotland.
It is also strange that the response from Dr Gerada is so similar to the wording of the SNC comments, neither attaching references for their views.
In the absence of a strong research evidence base for the causes or effective treatment of ME, it is particularly galling for patient survey data on patient treatment experiences to have been weighted so low as to have been effectively dismissed. If CBT and GET are as effective for treating ME as proponents claim, there should be thousands of recovered patients to report on, yet the evidence for this is consistently lacking.'
But it looks as though the Scottish guidelines *are* referring to the Canadian Definition, albeit with caveats.
A friend down south alerted me to the fact that Clare Gerada and Trudy Chalder make videos to guide GPs in dealing with CFS in England. So I googled and found this on the Phoenix CFS forum
http://www.forums.aboutmecfs.org/showthread.php?3966-Training-videos-for-English-GP-s-on-how-to-deal-with-CFS-patients/page3
Training video here.
Nice to have actors as a mouthpiece for your patronising, manipulative nonsense.
http://tinyurl.com/366acpo
I don't know what planet Trudi and Clare live on but this has nothing to do with ME. Truly beggars belief.
Anyway, I have read a bit more of the SGPS. It strikes me as mealy mouthed, it is perhaps *trying* to do the right thing but obviously still constrained somewhat by the psych bias.
Emphasises that the patient experience should absolutely be listened to but then still suggests GET/CBT as an appropriate intervention (though covers itself by saying many patients are made worse by GET).
So why recommend it in the first place???
Also, mentions that the MRC is pursuing research both psychosocial and biomedical. This is not true, MRC does not - so far - fund biomedical research. And an honest guideline should state that psychosocial research into the cause of ME is a tragic waste of resources.
At least Coxsackie gets a mention as a trigger, it doesn't in NICE as far as I know.
And the Canadian Definition is 'positively' referred to, but constrained again by bias of the Scottish Neurosciences Council.
It does mention some biomedical findings and links to ME RESEARCH UK - and other good links.
So from what I have read, it could be better but it could be worse. Less gung-ho about GET than NICE as far as I can see.
http://tinyurl.com/2aebbu8
ME Assoc initial response to the guidelines - interesting to learn about why certain people were chosen ...
I've also just looked at the shorter patient guide...light years ahead of what was available in 1984, and helpful in that it is recognising the illness is 'real' but there is I think an underplaying of how serious the illness can be and of how important it is to rest in the early stages... pacing is simply not possible when you are bedridden. The psych bias is alive and kicking.
Pacing is the name of the game when you are at a stage that allows pacing. And I do believe if I had not pushed myself so brutally when I first got ill I would be more recovered than I am today. But of course that is just speculation, I will never know.
The doctors' guide is more openly critical of GET than the patients' guide - this is of course to cover the doctors' arses, but there should be more transparency in the patients' guide. ie GET will probably do more harm than good, avoid it like the plague.
And no mention of WHO definition nof ME in the patients' guide. This is Gerada et al at work, don't for Godsake tell the patients their illness is neurological!!!
Alan Carson says that fasciculations are associated with motor neurone disease & not m.e in his letter. Yrs ago after my EEG I was told I had fasciculations but not to worry about motor neuron disease.
So if I'm to believe Carson then in fact he is saying I have neurological abnormalities!!!
I am glad u have posted this nasim, I had no idea who Gerard was married to either.
I am just glad I didn't know about all this behind the scenes skulduggery til recently, these non-ME experts making such important decisions about our lives, it is truly frightening.
I am horrified by it all, sends a shudder down my spine. To think if they had their way where would we be? No medication, carted off for GET & CBT, if not worse, i dread to think.
The comments about not taking children out of school are even worse, try telling that to parents who have a child with severe M.E.
The video clips I linked to a year ago seem to have been taken down but some of the transcripts still available on Phoenix CFS forum links above.
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