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If the program cures you, why would you need lifetime access?

I have had no testing other than routine blood tests that I occasionally push my GP to repeat. No scans, no special tests, no referrals to specialists. I'm still alive after 36 years of neglect of my ME/CFS, so I assume I my ME/CFS symptoms are not indicating something deadly.

They seem to have written a lot of words and repeated repeatedly their repeated self congratulatiory statements about their research and new approach... but nowhere can I see anything about what the treatment actually involves.

I have no idea whether the hypothesis makes sense, but I can't help wondering, if glymphatic dysfunction is a causal factor in ME/CFS, why haven't lots of us who have had ME/CFS for decades also developed Alzheimers?

I can't help wondering whether somebody is paying him to campaign for brain training and against ME/CFS being recognised as a physical disease. Why else would someone with presumably a solid track record in his field choose to expend effort in retirement on something that he must surely know is...

A post has been moved to: (Medscape) “ How to Help With ME/CFS and Long COVID Disability Claims”

Thanks for the list and notes, @SNT Gatchaman. I have given up watching research videos through lack of energy and concentration. Is there any particular work talked about that struck anyone as exciting? They seem to be still mainly focused on viral persistence. Have any of their research...

His perpetual repetition, each time with added layers of nonsense, is seriously weird. I don't think I had heard before his claim that women get ME/CFS more because we ruminate more. I wonder what he'll invent next to boost his self aggrandising claims of superiority. Please, Prof. Garner, go...

Typo. Many LC quality for ME/CFS ... Should be 'qualify'

Some discussion of the UK delivery plan and very severe ME/CFS on this thread: https://www.s4me.info/threads/maeve-boothby-oneill-articles-about-her-life-death-and-inquest.31707/post-635847

Perhaps they have discovered and discounted because of questioning of validity of some diagnoses in some discussions here, and questioning the prominence given on social media to anecdotes and hypotheses by influential pwME.

Does this squash the central sensitisation explanation of chronic widespread pain beloved of psychobehaviourists?

Lack of understanding and even recognition of long term disabling illness is everywhere. I signed up years ago to fill in YouGov polls about once a month. I have just done one where every question was designed to find out my preferences for spending and activities. Not one provided any option of...

She is also one of the leaders of #ThereforME and last I heard has a part time job doing social science research on ME/CFS/LC.

And therein lies the problem. Where are the doctors? Where is the joined up service for all pwME? Yikes. Nicely timed for the MEA/ELAROS/BACME launches. We're stuffed. There is nothing in this answer for pw severe ME/CFS

The workforce article is good, but very repetitive. It resonates with my experience of lack of employer support and workplace adjustments. One thing that's not mentioned in the article that I found particularly difficult was the lack of understanding among colleagues and line managers. I made...

Is this the same as the lie detector test?

They have included FUNCAP and DSQ PEM questionnaires as comparison. I'm not sure what that will tell them, since neither directly detects pem . As we have seen the whole industry of questionnaire 'validation' is highly suspect. Some dreadful and useless questionnaires like the Chalder Fatigue...

Yep, and all the app provides is a bunch of useless questionnaires and links to the MEA leaflets that you can get directly from the MEA. It's pointless.

I'm not at my best at the moment (hollow laugh - best isn't the right word for mostly bedbound). I've been overdoing it. I foolishly forced myself to have a shower and hair wash yesterday. Now I'm mistyping every word. I read this article and wept. It's so accurate about life when trying to...