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A very comprehensive submission indeed. It revisits the Chief Medical Officers report of 2002 and goes through each recommendation and provides a current update on that recommendation. It outlines unequivocally the failings of the UK establishment when it comes to people with ME. It pulls no...

I feel the need to say that I completely understand why IiME would not put their name to this document. Any document about ME that has a recommendation stating: “Recognize that ME is primarily biological, not psychological, in line with a growing international consensus” is not something I...

Just a thought. Is anyone in a position to get this information to that MP who has organized the PACE trial debate in the UK Parliament next week?

Well done Carly. Excellent letter. I have tweeted them about it

Does anyone know if there has been any analysis/critique (esp Patient analysis) done of this 2017 Paediatric Primer? https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Do you mean that all viral testing means nothing or just those ones I mentioned?

Thanks for the reply Squeezy. He got tested for tick borne stuff with Armin and it was all negative. He got his NK cells tested as well and they were very low. He's been on Multi Messenger since to bring these back up and I'd love to see if they have worked (he is feeling somewhat better than he...

Thanks Samuel. He had some viral testing with Armin Labs and he has active CMV, HHV6, Coxsackie A and B viruses but yet has never been offered any anti virals here. Very frustrating. I might redo those tests as that was two years ago. And yes I fully agree - I would love to know what a thorough...

Thanks a million for the response. He has had some of the basics but no minerals or vitamins as far as I know. He hasnt had cortisol or DHEA levels or thyroid hormones so thats good advice. They actually discovered last year he had H. Pylori while performing an endoscopy so he was treated for...

Im looking for some advice please. If you had an opportunity to get specialist blood tests carried out what ones would you suggest? My young lad is 17, formally diagnosed with M.E. by Dr. Nigel Speight in 2014 but ill since 2012. As he moves forward into adulthood and into our adult health...

Seems like it. Its peppered with that kind of stuff. On the one hand suggesting this and that test and then on the other deferring to mental health responses. My head is spinning trying to pin it down

Just checked out the Recommendations section, which is of course where most people will swing to first .. "Monitoring Chronic fatigue syndrome (CFS) is a chronic medical condition, with a waxing and waning of symptoms and impairments. Long-term management with a single primary care physician...

Ah I see now what you mean... I will be buying a new one any day soon and its only wrapped in a plastic wrapper so its easy to weigh. I'll weigh it when I get home and let you know :)

Not sure if this will help as its not a two parter, but I buy a 4.5 tog duvet regularly in Argos for my young lad. He cant bear much weight on him and he cant even use a duvet cover so with the result we buy replacement ones very regularly! They are really light and the fabric tears away easily...

I completely agree. I don't think it's a good idea to use a Thunderclap re one research source in this way. Supporting good science from whatever source is what should be said. This will be a missed opportunity

Might be an idea to send TedXBristol a copy of the ME Action PACE petition and the OMEGA petition as evidence that her narrative of a small vocal minority objecting to her and her beliefs is untrue