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Why not just train specialist consultants in the latest biomedical research and patients can see them, with further referrals for orthostatic intolerance signs and symptoms and symptom management. They also could write supporting medical evidence for sickness and disability benefit claims, as...

Removing GET is not enough and does nothing to address how and why we've been viewed and treated like this. The underpinning theory is what is at fault. There needs to be a complete paradigm change in how ME is viewed as well as treated. If NICE just drop GET, the clinics will just remove GET...

The thing is though, the clinic's literature and what they tell patients (and perhaps this consultant) before attending, was very different to what is delivered. He thought they did activity management/pacing, not graded aerobic exercise and psychobabble. The clinics also change their approach...

Where are the whistleblowers when you need them? Perhaps NICE should hear from them. Ex-staff of the clinics maybe.

After brainwashing sessions at one of the NHS CFS/ME clinics years ago, I eventually got referred to the consultant because according to the manager, I 'questioned the diagnosis'. I explained that I didn't, I just strongly disagreed with their explanation of the illness and didn't identify with...

No to any form of CBT. The reason I say this, is people assume we get supportive therapy for the newly diagnosed to come to terms with living with a highly disabling illness. The type we really get is brainwashing patients into believing what they have is not pathological but their thoughts and...

A clinic which offered advice on what patients consider pacing ie energy/activity management. How to do what your body will allow with limited energy and the lowest energy way to do it. This could be with support from an OT, with ideas of using disability aids. Referrals to Social Services for...