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Nope. Only before ME. Both very pleasant experiences. Would definitely try LSD, mushrooms, and ketamine to see what affect they had on my symptoms. Ridiculous that these chemicals/molecules are banned. The war on drugs has been an absolute disaster for our understanding and utilisation of...

I'm a bit worried that the numbers have plateaued at or around 20,000 since the initial wave of sign-ups. My understanding is there needs to be significantly more than 20,000 registered due to numbers reducing during screening. Is there a plan to try and ramp this number up?

Yes, that seems likely to be part of the story. As well as in the gut, bacteria in the mouth are very important.

This is a pretty standard example of how my tongue often looks, though the 'white food debris' issue is less pronounced these days. Still get lots of bare patches, and the sides of my tongue are scalloped. I don't recall having these issues before becoming ill.

https://www.huffingtonpost.co.uk/entry/covid-tongue-explained_uk_60016507c5b62c0057bc0be2?ncid=fcbklnkukhpmg00000001&fbclid=IwAR3KZkyFOqPM2vuwSrM_MVSvLoAM-U4nInQ5UtnlL3LzXEwPJYhWmlzOa4g&guccounter=1&guce_referrer=aHR0cHM6Ly9sLmZhY2Vib29rLmNvbS8&guce_referrer_sig=AQAAAGa517_TqWUBcV_ZrgqWanMDO6DeMe...

Exactly. We don't know what fibromyalgia is, and therefore Dr. Myhill should not be making assertive, confident statements about what fibromyalgia is. Or for that matter ME and CFS, which she routinely does.

Fibromyalgia is an allergy to gut microbes, apparently. Completely bonkers as usual!

"Up to 20% of people worldwide develop gastrointestinal symptoms following a meal" Not exactly sure what this means. Does it mean 20% have regular issues, or that 80% of people have never had gastrointestinal symptoms following a meal (which surely cannot be the case)?

The CMRC PAG has forwarded this thread to the ME/CFS Priority Setting Partnership who are currently formulating the main survey/questionnaire that will be distributed to patients (and their carers, etc). (https://www.psp-me.co.uk/)

Newton and co did some work on this. https://meassociation.org.uk/2013/04/biological-breakthrough-offers-fresh-hope-for-me-sufferers-the-times-23-april-2013/ The link to the press release is dead. And no link to study.

George is a great journalist with huge reach. He is mostly involved with Double Down News (also very good) these days, so an article may appear there.

I just came to say I've had actual cramp only about three times in my whole life. No idea why it's never been an issue for me.

Yes, and sometimes it's more serious than just looking terrible. Excel is not really fit to do publication-quality data and statistical analysis.

I spot Excel plots...

Maybe they said Covid guideline committee, not the long-Covid panel.

Not one mention of post-viral illness / syndrome / fatigue in the whole guidelines. It's as if a whole body of research—and the documented experience of millions around the world who became chronically ill after as virus—just don't exist, and didn't exist until Covid-19 came along.

Can I just say it's amazing that these papers even have to exist. We have watched in real time patients getting and remaining ill, and we've seen studies already showing that this is often because the virus is attacking different bodily systems and tissues. Yet CBT is still in the mix.

Long-Covid would encompass any prolonged symptoms something like 4 weeks + after initial infection. Post-COVID-19 fatigue syndrome would be a subset of long-Covid patients who have fatigue as a main symptom and the diagnosis would be given much later. NICE say 12+ weeks for...

File under post-modernist nonsense.

Just a note...this email went to my junk email folder. It might be worth asking those who have signed up to add an email address to contacts.