ME/CFS Clinical Guidelines Skewed?

So remember my saying that new clincial guidelines here in the UK were a mixed blessing?

That whilst they make some progress the recommended treatments of GET (Graded Exercise Therapy) and CBT (Cognitive Behavourial Therapy) are management therapies not treatments?  And that these therapies can be harmful to CFS patients? 

That studies have shown that GET can make sufferers worse and whilst CBT can be helpful in learning to deal with a chronic illness it is not a treatment for the physical disorder and not considered a first line treatment in other physical chronic conditions.

Ok well I might not have said all of that exactly LIKE that but …

A group called The One Click Group is planning to take legal action over the NICE guidelines for CFS/ME.  They say that the NICE group was skewed towards the psychological CFS lobby and that medical evidence and research was disregarded.  That NICE have acted unethically.

They also say that stating GET and CBT as primary treatments for CFS despite research which says it is potentially harmful – is a violation of patients human rights. 

It’s a big claim – but you know it makes sense when you think about it. 

CFS is a dumping ground for misdiagnosis.  We’re perpetually told there is no single test for CFS/ME and no distinguishing markers other than a lack of any other physical illness.  But it’s not actually true.  You can run tests to establish common abnormalities.  You can also run tests to rule out other disorders. 

My GP had to be very insistent with the lab in order to get my test for Lymes Disease processed. It’s not a usual test – they say.  Which makes me wonder how many people in my area with CFS have never had the test done.  I digress.

The rally call comes from One Click Group to support the court action and not just let an inbalanced set of guidelines stand unchallenged.  These guidelines which have a real impact on our treatment and health, and which send the wrong signals out to all agencies and to other countries.  One Click are asking for cash to help with the legal costs – at this point a commitment to a donation.  If they don’t raise the full amount they will not proceed.  And all donations will be anonymous. 

There’s lots more info on the One Click site site.  It makes interesting reading (but they could do with some succinct summaries for the foggier among us).

A small donation doesn’t seem much to try and get these guidelines reviewed.  If they’re right and we’re wrong then let it be proven so. 

There’s too much going on out there that has not been listened to in preparing this document.  If they don’t have effective treatments then say so – don’t pass off inadequate therapies as proper treatments.

And it’s not just a UK issue – you can bet where an easy answer that generates big bucks for some people is accepted here, it will be used as leverage in other countries too.

Exercise and physological therapies for physical illnesses under a blanket diagnosis – coming your life soon?


3 Responses to “ME/CFS Clinical Guidelines Skewed?”

  1. 1 dr speedy October 19, 2007 at 9:13 am

    yes very skewed indeed.
    thx for your comments.

    sorry to see you have enjoyed the so called secondairy gains as well.
    great stuff.

    i enjoy being bedbound so much
    i recommend it to anybody in general and delusional psycho babblers in particular.


    Dr Speedy

  2. 2 Ashy/Katie October 23, 2007 at 1:49 pm

    So glad to have read your blog and seen the one click group campaign in time! I have been getting really hot under the collar about these issues and now feel that i have been able to do something about it and feel part of the movement towards change for the better! Many thanks for drawing attention to it. I have posted on the BBC ouch website message boards about it and sent to friends – hope it goes ahead and that we get better recognition, support, research done and maybe even, dare is say, treatment in future!!

  3. 3 rachelcreative October 24, 2007 at 9:41 am

    Ashy/Katie I’m so glad! Thank you for spreading the word a little further.

    So often with this illness and lack of energy it’s easy to feel helpless with such things. I like the rally cry from One Click – that here is something we can do to make our voice heard by standing together.

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Push It 11 Sep 2011

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