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I don't have a good understanding of all the goings on but is there a danger that the WHO will remove ME from the 'neurological' category into BSS? I so hope this is not likely...also when is this WHO update due to be finalised?

Has anyone seen any improvement giving up sugar? I have leaky gut and obviously should be cutting down but I am addicted. I find that a cuppa and a bar of chocolate always lift my mood, albeit temporarily. However, my health is continuing to decline. And I feel maybe I should give it up to see...

@Action for M.E Clare, you do realize that people are dying from M.E....Merryn Crofts, Ian Rudds were recent deaths. M.E can be life threatening and fatal. Biomedical research is needed not exercise or cbt. Lives are at stake, what does it take to get through??? I just can't understand where...

Agree, we have to start somewhere

How do they plan on getting accurate numbers when we have no definitive diagnostic criteria that is used by medical practitioners? Alot of doctors think fibro and ME are the same thing or else know nothing about ME. Until that problem is addressed...the whole thing is a waste of time imo

@JaimeS

@Hip are you hopeful about the cortene venture?

I have emailed Dr. Nath and Brian Wallitt and both replied to my questions and were helpful. Dr. Nath didn't answer my most recent question about what the exact numbers are now in phase 2 but Brian has answered that here. I so wish the study wasn't so slow....my fear is not living to see the...

Severe ME is no gift, I don't care how much empathy you gain.

Gift!!! No thanks. Its torture.

https://www.cellmedicine.com Stem cell therapy in Panama which isn't life threatening. They use umbilical cord stem cells. https://t.co/43DEEMyud3?amp=1 It doesn't appear to be a long term solution though.

As they use stem cells from patient's blood, as it is unaffected by MS.....I wonder does that exclude ME patients from something like this as we have something (s) not right in our blood as per Fluge & Mella and Dr. Davis. I suppose it's the usual...we don't know enough about the pathogenesis of...

I agree, I think we've had some mixed messages. It started off fantastic, great expectations....its like the air has gone out of the balloon since. Where is this Mark Davis video that was recorded before Christmas....surely it's time to release it at this point.....

Thanks Gary. I just had flashbacks to Martine McCutcheon. Appreciate the clarification.

@Gary Burgess I get very concerned when I read 'getting better'.......as Trish said, so many of us don't get better, in fact most with ME as defined by ICC criteria do not recover. Some get worse. I am almost 2 years in, use a wheelchair, partially bedbound, cannot function as a mum to my kids...

Excuse my ignorance but is this good news or are we not sure yet?

Thanks Liv xxx

He uses Fukuda criteria

Yes!! That's me. I am a newbie and have been suicidal and still sometimes feel like escaping due to the hopelessness of MUS, stigma, no help etc....I have to say Carol Momaghan and Gary have given me hope. I really hope Carol stays on the case.

Such a horror show