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Excellent result. I realized the children will all be adults by now, given 8 years have passed. I just want to check a few points - Bristol did not claim researchers might be harassed if data was released? - there were no attempts at "character assassination" of "activists" like the...

motivated intruder? They tried that one with the PACE trial...

ME-ICC diagnostic criteria D. Energy Metabolism/Ion Transportation Impairments: At least One Symptom 1. Cardiovascular: e.g. inability to tolerate an upright position - orthostatic intolerance (OI), neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS)...

supplement with potassium for hypokalemic periodic paralysis or nomakelmic, less potassium for hyperkalic form

There's an acquired form

Dreamhost (ISP) took ages to fix it - and it was caused by their "maintenance work".

Doesn't Denmark have an obligation to follow the WHO's ICD classification? Which explicitly excludes ME/CFS/PVFS from that category?

What EC protocol? Is this a separate document, or just the usual Crawley stuff? Any idea how many have been un-diagnosed with ME/CFS *after* failed treatment and labeled with Pervasive Refusal Syndrome and Fabricated Induced Illness instead? As Crawley does?

Ironically, the FND comparison of a computer with software that does not work actually DOES fit a number of physical conditions, including hypokalemic periodic paralysis and normakalemic periodic paralysis ... The full version of this post has been copied, and subsequent posts discussing it...

Moderator note: This post and several posts discussing it have been moved from this thread: https://www.s4me.info/threads/trial-by-error-crowdfunding-week-2-and-more-sharpe-and-chalder.9107/page-2#post-160657 Ironically, the FND comparison of a computer with software that does not work...

By the 25% ME Group on preventing unnecessary sectioning in ME patients - KNOWLEDGE IN THE HOPE OF PROTECTING M.E. SUFFERERS FROM UNNECESSARY SECTIONING Re: Fightback They have insisted on "premium" membership which is supposed to be voluntary before helping people and also badly let down...

Alan Stanton is on the NICE guideline development group - appallingly - despite his previous GMC complaint related to one of the cases mentioned above and his continued publishing of how to force treatment on children who don't consent - including 17 and 18 year olds - and how to remove their...

Oops!! Michael Sharpe's deleted tweet questioning how ill people really are was particularly cutting because of that (the one that drew objections from Alem Mattees' family)

That's harsh. There's a major imbalance of power here - activists do not control funding amounts, what is funded, what criteria is used for research, treatment guidelines or training for professionals - those that do overwhelming portray ME as a fatigue condition only or dismiss the...

that was my concern too

After yet another round of news articles misrepresenting the views of "ME activists" can someone please point me at some actual views. Either individual patients or links to charities' / organizations' views. Alternatively, what do you see as the most common views of ME activists? Maybe the...

Great update MyalgicE - a few points to raise: No mention of severe ME. Do they even accept that some people can't even get into their swimwear, let alone get in a pool unaided? If you've seen Unrest then see what Jessica needed to get in the water. I'm at risk of drowning in my own bath since...

Sounds good. MEpedia also keeps history of each page but a separate archive is important too. It's not clear to me how the web archive chooses which pages to archive. I know it won't just archive the whole of any site. Perhaps the Contents page is a key one to archive and might encourage the...

Have seen earlier media from Crawley claiming that severe ME affects only 10% of adults and 10% of children with ME - as if the 25% figure was open to debate. The 25% ME Group no doubt would disagree. Seems this like this an another attempt to downplay and disregard the most seriously ill by...

Use the data opt out if you don't want your kids data involved - https://your-data-matters.service.nhs.uk/privacynotice#How-to-view-and-change-your-choice - but they can't do it unless you have an email address or phone number registered with your GP - since bizarrely opting out needs you to do...