GBG Questionairre on behalf of NICE..... - Myalgic Encephalo...

Myalgic Encephalomyelitis Community

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GBG Questionairre on behalf of NICE... Outcome?

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Just wondering if anyone here actually took part in the 450 page questionnaire developed by GD Group on behalf of NICE, if not have they have read it and does anyone know what the actual results are. I have stumbled across a document which I think is some sort of guidelines with submissions of case studies.

I was ignorant to the fact that this questionnaire was handed out but wondered if it was limited to my English , Welsh and Irish friends. Does anyone know if Scotland has done a similar study and if they have do they know where I can access either it or its results. I have an OH visit on Thursday and having been given very little information from my GP other that to limited goal setting, fit notes for work. and repeat prescriptions. I have previously visited rheumatologists, gastronomicists,had endoscopys and colonoscopys, gall bladder removed, hysterectomy at 38, Cervical scans for Pain, Migraines and IBS, Fibromyalgia, Malaise, poor concentration and memory loss. Just had heart MRI due to chest pain but waiting on the results; had mri for brain and leg after fall. Walk very little now and am floored after very little exertion or am clumsy and fall. I was however hoping to be able to present the Occupational Health doctor with some recent guidelines (i.e. not those that recommend GET and CBT) as been there and got the t-shirt. Preferably some document which can confirm the symptoms I have are real, prognosis to recover/maintenance/ how the care system should treat 2015 ME patients. Any documents or help would be very much appreciated. Jax

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ALKT profile image
ALKT

please check the pheonix rising site it has link to many biomedical papers and a scathing review of the flawed pace experiment that many medical professionals have wrongly excepted as beneficial to people with m. e .c f s. unfortunately i do not know how to do these links myself. best of luck getting your ot to read the papers.

sulamaye profile image
sulamaye

I can possibly send you a practioners primer that was developed by world m.e board, but will have to wait until my laptop is on and I am out of bed.

sulamaye profile image
sulamaye

if you pm me more email i will send you the clinical primer document

sulamaye profile image
sulamaye

Better still I've found the online link for you and anyone else who may find it helpful:

iacfsme.org/portals/0/pdf/p...

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