Author Topic: Important survey for all in the UK regarding the consequences of GET/CBT on ME  (Read 351 times)

Countrygirl

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Hello to all in the UK,

The MEA has sent me this e-mail this morning as they are hoping to test the claim by NICE that GET/CBT is the best form of treatment for ME. ;D

Please, please do participate in the survey and explain the effects that GET/CBT or earlier versions of that approach............eg as in my day  ;) I was told to exercise my way out of the symptoms (put me in a nursing home and a permanent severe relapse).....................affected your level of functioning.

Please follow the links and all will be revealed.................I hope.


This is our opportunity to send a message to the Government and the cabal of psychiatrists who have hijacked our illness.



This email is being sent to all UK ME national charities and support groups.

 

We have today launched a major survey on CBT, graded exercise and pacing. Please see www.meassociation.org.uk Latest News.

 

This is an important survey, particularly in view of the proposed 2013 review to the NICE guidelines and we are hoping that you will feel able to help with it by bringing it to the notice of your members. 

 

Our chairman’s letter, in our quarterly magazine, ME Essential, out this week, says “I am always keen to work with other ME/CFS organisations where there is an opportunity to benefit everyone with ME/CFS. With a bigger voice we are more likely to be listened to and heard”.

 

It is an anonymous survey - the email addresses only go to providers of the survey programme and are not recorded by them.

 

Please could you ask your members, if they have any queries, to send them to me on barbara@fernside.plus.com. Queries sent to the office will be forwarded to me and a direct email will save a busy office some work.

 

There will be a slight delay with the printed form but the survey will be open for at least 3 months.

 

Regards

 

Ba Stafford


Vice Chairman ME Association

Patricia

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Is participation in this survey limited to UK residents?




Details about the survey are on the ME Association website.

http://anonymouse.org/cgi-bin/anon-www.cgi/http://www.meassociation.org.uk/?p=11204

WHY DO THE SURVEY NOW?

We expect the results will influence the next review of the NICE Guideline on ME/CFS treatments, which is due to be announced next year. We’ll include the results in our submission to the review which may lead NICE (the National Institute for Health and Clinical Excellence) to come up with new guidance to doctors.

And the evidence we gather from people who have tried out these therapies may be helpful to medical researchers when they apply for funding for new studies into these approaches. As yet there has been no substantive research carried out into Pacing.

WHO CAN TAKE PART?

Anyone who has – or has had – ME/CFS or PVFS AND and have taken part in a course of CBT, GET or Pacing, either attending in person or going online.  If you only completed part of a course, we would still welcome your views.

OR you must have self-managed your symptoms using one or more of these therapies
OR have been refused a course.

HOW CAN I TAKE PART?

Either go online now
by clicking on the link below, and saving the form when you’ve had enough. You can always return to the form by clicking on the link which is showing in our “Quick Links’ box. It will take you straight to where you left off and, at any point, you can look back at or alter your earlier answers if you wish.

Or you can request that the form be sent to you by email for downloading to your screen for printing off yourself. Email Gill in our office and she will send you a copy. Please make sure you post the form back to Gill by the middle of August.

If you don’t have an email address, for have difficulty reading on screen, ask for a paper copy to be posted to you by writing to Gill Briody, Ramsay ResearcH Fund, ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF, or phoning 01280 818964. Again, we ask for the forms to be returned by the middle of August. But please take part online if at all possible – it will save us expense and probably be easier for most of you.

To read more about the background to the survey, please click HERE.
A person's actions tell you all you need to know.

Countrygirl

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Hello WD,

 Ba phoned me last week and I asked that very question. She said, unfortunately, given that it is to be used to test the efficacy of the NICE guidelines that it is restricted to UK residents. However, I think that if you have particular experience of CBT/GET from another country it may provide useful supporting evidence for them to add to the experience of the UK patients. NICE would no doubt state that the process in another country may be applied differently to that in the Fatigue clinics in the UK, but the general principle remains the same.

Others have mentioned that they have been pressurised by the Fatigue clinics to admit that ME and CFS are forms of depression and have refused to participate. I think this should be recorded as well.

 Many years ago I remember being told that if you are faced with an exam question you know nothing about, write an answer that you do know, and shape it to the question. I think this is how I shall respond as I have never been offered, thank goodness, GET/CBT, but was order to increase my exercise and ignore my symptoms. I did, relapsed severely and ended in a nursing home and never returned to my previous level of functioning. It doesn't answer their question, I know, but I shall still use the opportunity to supply them with the information. I shall also ensure I will summarise the experience of the hundreds/ thousands of patients who have phoned me over the last quarter of a century. If there is any chance of the information being of use to the MEA I shall send it. I hope it won't make the situation difficult for them, but I don't intend to let this opportunity pass without taking full advantage of it.

Thanks for posting the extra information, WD.

I had an e-mail from Ba to say the site isn't working correctly yet, and she was waiting for someone who would know how to solve the problem. I hope all is now well and functioning as it should.



C.G.