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The issue is how to get that information to them - I haven't seen any individuals share their contact details including patient reps, and the fact we don't know what is going into each meeting's agenda.

CBT evidence Null effect: Whitehead L, Campion P. Can general practitioners manage Chronic Fatigue Syndrome? A controlled trial. J Chronic Fatigue Syndr 2002;10:55-64. https://www.tandfonline.com/doi/abs/10.1300/J092v10n01_05 Huibers, M. J. H., Beurskens, A. J. H. M., VanSchayck, C. P...

Care needs & Dietary Interventions Patterns of food avoidance in chronic fatigue syndrome; is there a case for dietary recommendations?. Nutricion hospitalaria, 27(2), pp.659-662. https://www.redalyc.org/pdf/3092/309226786046.pdf - provides key evidence that some CFS patients are significantly...

Quality of life and pain Neurological Alliance survey 2019- over 300 people with ME/CFS included https://www.neural.org.uk/wp-content/uploads/2019/07/Neuro-Patience-Techincal-Report.pdf Tables from p45 onward show: ME/CFS has lowest quality of life due to the impact of symptoms, worse than...

But it clearly excludes commentary without data analysis, for example Geraghty's Types of harm from CBT can't be sent because it doesn't fit their narrow descriptions.

Monitoring Showing Chalder Fatigue Scale "Fatigue Scale" and all others are inadequate, but not criticizing DPSQ (Leonard Jason's De Paul Symptom Questionnaire) which was not available then or the Hummingbirds' Foundation M.E. Ability and Severity Scale (unable to find any studies on that) The...

They are also intentionally excluding criticism articles such as lists of harms, unless these are in survey forms which of course they are not - surveys are on if harm occurred not what type.

Systematic reviews are allowed, and other comparative studies. The FINE trial's nil outcome can be used. It makes no sense to ask for trials/reviews about management strategies during assessment, or monitoring / reviewing a diagnosis - how can either be a trial, review or comparative study...

Re: BELIEFS Any interventions that specifically aim to target beliefs about the illness are totally unacceptable and would not be tolerated for any other illness. This has been one of the most damaging things, and has led to persistent gaslighting by professionals who attempt to bully...

Common Data Elements it would be a great help for some to go through what's most relevant here https://www.commondataelements.ninds.nih.gov/Myalgic%20Encephalomyelitis/Chronic%20Fatigue%20Syndrome Please, please please can people look for what's there on very severe ME - what would help...

Significant evidence from WorkWell Foundation and Leonard Jason on many of these

Still nothing public from Byron Hyde?

Yes, I have read her response to that. A part of it may have been the freezing of samples. I'm shocked at how few patients were involved too. I had hoped ME Research UK could have funded a larger group

So sorry for your loss.

Any response from Hyde yet? I think it would be interesting to here reflections on Hyde's work by those posting who haven't seen it before. The Little Red Book (A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome) A few facts not...

She's not pushing a specific "weaker treatment" and has not created some kind of branded treatment like we've seen from Gupta, the Lightning Process, the Perrin Technique or many others. She's addressed the actual science and ethics failings involved in PACE. Are you aware that Myhill's...

Hyde was a researcher too. And yes, you are missing a great deal. Just because most people get shoddy treatment based on 2 symptoms does not mean that is an appropriate standard of care!!! Nor is that even good enough for symptom management for many. It most likely helps those with mild or mild...

If anyone has a reference for the complaints against Myhill please post - I heard she was the most investigated UK doctor and thought that info came from a FOIA request. I can't find any source other than Myhill.

I don't know about KDM - he was importing medications illegally which is a huge thing - but Myhill - while pretty rebellious in her approach - has done significant mitochondria research and truly wants to get to the bottom of ME, and as far as I have heard she treats her patients with respect...

It's not Hyde's fault or responsibility that a group of patients do this - it seems to be only a minority of his followers that do it. They are just loud and persistent. The ICC has a similar group who reject everything else, and claim only "true ME" (whatever that means) can be diagnosed by...