ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

Mojisola

marigoldhen wrote: »

I'm now in a quandry and don't know what to do with the information.

Dr Myhill has put her treatment regime into a free book which you can download at
https://www.drmyhill.co.uk/article.cfm?id=362

This tells you how to work through the system. It's not very MSE when you get to the supplements but she buys in bulk and passes the savings on to her patients.

Read the home page https://www.drmyhill.co.uk/ for general information.

CJ

Hi All

Does everyone know about www.meresearch.org.uk it is a Scottish based charity which funds research and has some new and exciting work on the go

tomk_3

maytaurus wrote: »

Thanks for all your input
I went for review and to appeal and got turned down at both
I ended up with over 300 pages of info having been given to them,
including letters of support with info from my GP and the M.E. specialist centre in Liverpool.

Just wondering whether you saw the letter from the Liverpool centre?

Many of the people who work or have worked there have strong views.

I'm appending an example. They ignore that the people in receipt of sickness benefit may be the sickest who tend to be the hardest to treat so that might be why they didn't improve with CBT-type treatment. Also the people who improved may have had some general fatigue syndrome.

Predictors of response to treatment for chronic fatigue syndrome.
Bentall RP, Powell P, Nye FJ, Edwards RH.
Br J Psychiatry. 2002 Sep;181:248-52.
The stated Results were:
"Poor outcome was predicted by membership of a self-help group, being in receipt of sickness benefit at the start of treatment, and dysphoria as measured by the Hospital Anxiety and Depression scale. Severity of symptoms and duration of illness were not predictors of response."

marigoldhen

Mojisola wrote: »

Dr Myhill has put her treatment regime into a free book which you can download at
www.drmyhill.co.uk/article.cfm?id=362

This tells you how to work through the system. It's not very MSE when you get to the supplements but she buys in bulk and passes the savings on to her patients.

Read the home page www.drmyhill.co.uk/ for general information.

Many thanks for the links, they look really informative. I shall be reading them in depth to see if they can shed any light into my daughter's life.

Kizzy_S

Can I just ask something? I've always just read these forums but I couldn't just leave this be.

Have any of you actually read the guideline? It doesn't say at any point that it's "all in the head" - in fact it says just the opposite - several times!

It recommends CBT as a way to cope with the condition - NICE recommend the same thing for cancer patients - does that mean they think cancer is all in your head?!

And GET is proven in clinical trials to help some people, so NICE recommends that it be OFFERED to people who want to try it - nobody will be forced to try it if they don't want to.

If this guideline gets withdrawn, the NHS will withdraw all their services for patients with ME because they will be under no obligation to provide them any more.

I think that what the One Click Group are doing is completely counter-productive and will make my life, as someone with CFS, incredibly difficult.

tomk_3

Kizzy_S wrote: »

It recommends CBT as a way to cope with the condition - NICE recommend the same thing for cancer patients - does that mean they think cancer is all in your head?!

I don't think that is true. Have a look at column A in the table at:
http://www.meresearch.org.uk/information/publications/niceguideline.html

CJ

Kizzy_S wrote: »

Can I just ask something? I've always just read these forums but I couldn't just leave this be.

Have any of you actually read the guideline? It doesn't say at any point that it's "all in the head" - in fact it says just the opposite - several times!

It recommends CBT as a way to cope with the condition - NICE recommend the same thing for cancer patients - does that mean they think cancer is all in your head?!

And GET is proven in clinical trials to help some people, so NICE recommends that it be OFFERED to people who want to try it - nobody will be forced to try it if they don't want to.

If this guideline gets withdrawn, the NHS will withdraw all their services for patients with ME because they will be under no obligation to provide them any more.

I think that what the One Click Group are doing is completely counter-productive and will make my life, as someone with CFS, incredibly difficult.

I have had ME for 25 years so have heard everything the Drs wants to say about CBT & GET, it is all they know to offer because very little else is published. Our psychology dept do not offer CBT to ME patients because they don't believe it has any significant impact on the illness.
It is difficult to retrain your brain about an illness they don't know the cause of. CBT is offered to patients suffering from all sorts of well documented illnesses that are well researched and funded and where treatment is available and is used as a coping mechanism not a treatment with a view to a cure as has been suggested for ME. ME isn't well researched or funded and as yet the cause of the illness is not known, for those of us who spent, in my case the first 6 years being told it is all in the mind then CBT is like a red rag to a bull

Kizzy_S

Tomk - the quote in the table you linked to does not seem to appear anywhere in the NICE guideline.

The guideline actually says:

CBT is an evidence-based therapy for CFS/ME. It is a collaborative approach that aims to reduce the levels of symptoms, disability and distress associated with CFS/ME. CBT or psychological approaches to CFS/ME do not imply that symptoms are psychological, 'made up' or in the patient's head. CBT is used as part of the overall management for many conditions, including cardiac rehabilitation, diabetes and chronic pain.

(p.190 http://www.nice.org.uk/Guidance/CG53/Guidance/pdf/English)

I don't know if this is deliberate misinformation or a genuine mistake, but it is at the very least extremely careless. I guess this is what happens when information is passed around on the internet without people checking their sources...

CJ - I completely agree. The lack of research is a scandal. And that is where we should be directing our precious energies!

daska

CBT is fine as long as it is recognised for what it is - a way of identifying thoughts and beliefs that are unhelpful and replacing them with ones that are positive. That's as good as it gets. It is not a cure. For someone like myself, who has always found ways to cope, or get around the not coping, it is of little relevance. For someone who always focuses on what they can't do and how awful it is, rather than more positive aspects, it's very valuable.

GET is another matter entirely. And it isn't helped by the fact that a lot of GPs obviously think they understand it but haven't got past the concept of 'must do more exercise every day'. The first GP I saw, despite the fact that I explained that I was literally grinding to a halt unable to move except to fall over, told me that I must carry on walking for another 5 minutes and up it by 5 minutes a day until I got better. Fat lot of good that did me, I pushed myself and got worse and worse.

Kizzy_S

daska wrote: »

GET is another matter entirely. And it isn't helped by the fact that a lot of GPs obviously think they understand it but haven't got past the concept of 'must do more exercise every day'. The first GP I saw, despite the fact that I explained that I was literally grinding to a halt unable to move except to fall over, told me that I must carry on walking for another 5 minutes and up it by 5 minutes a day until I got better. Fat lot of good that did me, I pushed myself and got worse and worse.

That sounds awful! I can't imagine how I'd feel if a doctor told me that. Luckily I'd already read up on GET and I knew much better than my GP what it actually is! It's not about 'pushing your limits' at all - and again, the NICE guideline does make that pretty clear.