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It's confusing to why there is a separate paediatric section for long covid. Regardless of whether they interelate or not why single out Long Covid, as all the other illnesses would effect children?

The expert report for Long COVID in CYP for the COVID Inquiry has been published. There is discussion about ME & Long Covid within it. But it essentially reads as a puff piece for the UCLH Long Covid Clinic, TRACCS & the CLoCK study. Whom both Whitaker and Segal were in the consortium. There's...

He seems to be one of those doctors that says it's not in your head but then proceeds to go through the psychologisation tropes. He literally has a video saying how fibro is related to trauma. What he's describing here is central sensitisation (or hypersensitivity) which is a theory not...

It's likely that more care is needed on media training and statement preparation. Every word and sentence matters - especially when it's likely going to be cut & respun. But that's the problem of giving too much to thanking and bending the knee.

The PPI co-lead for Elaros is Ruaridh Milne, and he's on the board of the Open OH app, he is also part of Long Covid Support. Not sure if that charity is formally doing the PPI but there's a connection - so it's not just the ME Association with links. https://www.elaros.com/our-advisors/

I can understand why they thought the piece should be thorough, but not sure if trying to prove what ME is biologically is needed here. It's easy to go off on tangents as it's all so connected. But just focusing on a timeline of Wessely's involvement in ME would make it more readable &...

It is worth saying that there are lots of decent videos in the YouTube series. And alot of work must go into them. There's one with David Putrino, Amy Proal and Todd Davenport. Maybe though with a monthly series you run out pretty quickly of reliable experts. And the temptation is to then...

Can you remember the source for that @BrightCandle ?

Posts moved from Be Nourished - Rachel Jessey The last video was with Nadine McKie. https://www.youtube.com/live/JzQPA1QXDGw?si=RDaXJUdUyJ63Kji0 I'm not sure if anyone else saw it, but would say don't if you don't wish to traumatised yourself. It was basically psychosomatic babble about the...

Amazing how ones product wonderfully solves the problem Hope people notice the COI before chugging eucalyptus!

Looking at the paper the authors mention low dose rapamycin and intravenous immunoglobulins (no idea personally if they are the right ones!)

Thanks! Id never heard of structured water - the 4th stage of water is quite a claim! Some of her advice seems pretty sensible - eat well, get light etc - but when one has severe Long Covid getting morning sunlight and walking around barefoot isn't going to help and is going to make one worse...

Wondered if anyone has come across Rachel Jessey? We were recommended her from a Long Covid clinic but on looking her up it looks a bit suss - there's stuff about quantum biology and circadian rhythms, but really there's nothing to access for free essentially. It's all sign up for master...

Glad to hear David is going to be working for another year. His contribution is beyond measure.

Evolutionary, joint wise, the human body is rubbish upright, it can lead to back and skeletal issues. I'm hypermobile and had alot less pain since being more bedbound due to the lack of stress on the joints, especially lower back. I also seem to have grown 2cm - most likely as gravity isn't...

It's a good question. What is fight n flight? I'm not sure exactly what it is. I'm curious as it's often referenced in regards to ME as a given. But noone seems to really define what it is and the evidence. So I'm also asking what those who claim it's fight n flight really think it is?! (I'm...

Will try and clarify! Yes I'm wondering if there is specific evidence of fight n flight in ME?

Just pondering if there is actually any scientific backing to the whole 'fight and flight' narrative? It seems to be everywhere but with often no citations or studies. I'm aware it's popular in the pseudoscience lands of brain retraining. But it crosses over into other doctors and commentary...

It's an excellent article!

Yes, there definitely might be strategic value in keeping enemies closer. The ME Association are members of the CPCS & likely take the same tact. I suppose it's whether the charities see them as an 'enemy' and have the discrimination to see what they are really about? The ME Association have...