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'Unfortunately, it is unclear whether all five characteristics must be present for PENE to exist, or if fewer would suffice to meet criteria,' is a problem Charles Shepherd noticed when he revised the London Criteria...

This is a bit naughty, since there isn't a proven biomarker.

I think it's body weight as it currently is for protein. Yeah, I missed the bit about saturated fats. I have no problem with those.

I've probably missed it because I've been swamped with NICE stuff, but do they do drafts that stakeholders can respond to in a similar way? Or is it more of a closed shop?

It has. That was just the first study I found. Here's a longer study, looking at children with epilepsy (note that children are still growing, so the size issue probably doesn't happen for adults, although fractures would be a risk factor for our population)...

@Trish, it seems to be relatively safe long-term: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2716748/ You need to watch your electrolytes (especially potassium to avoid kidney stones) and keep hydrated, but your cholesterol should get better and you should lose wait. When I relied too much on...

I believe it was written by two people who have different views about the illness, but it could have done with some input from patients. As it is, it's a sloppy compromise at best, and openly contradictory at worst.

He seems to do this regularly. I'm not sure it's intentional (I'm pretty sure he's just experimenting with different ways to measure or assess post-exertional symptom exacerbation to figure out which is best, because the definitions do seem to evolve), but he needs to be clear about the problems...

Thanks. I'm glad you've taken the time to comment. I've read the comments again, and some of them do feel personal. Not all of them are yours, of course, but it does make me feel uneasy. This, to me, is the problem. PEM or PENE or PED needs to be properly defined. Everyone gets tired after...

This is further complicated by the fact some Fukuda studies still make PEM compulsory, so we're not always comparing like with like.

Sure, THC is addictive, but current legal CBD blends are like 0.2% or something. There's some evidence that it needs to be at least 5% to get the best benefits, because the THC increases the positive effects of CBD (especially for pain). A doctor talks about it here...

One issue seems to be that IOM isn't 'neurological' enough. But I don't buy that. It's clear to me that OI and sleep issues are supposed to be ANS-related. It's just not as explicit. Another is that PEM isn't PENE (which is generally more detailed and makes an assumption about cause in...

It's also possible that the criteria themselves don't inherently sift out primary psych diagnoses. That means additional work has to be done to rule out other problems. But this only adds to the complexity of the CCC and ICC. People may not realise they have psych problems, or may actively...

They were co-morbidities. Only certain primary psychiatric illnesses must be excluded, but it's possible for patients to have depression and anxiety too, for instance. That is a big problem, though.

This is my understanding too. I suspect that focusing on lobbying the CDC to reword the cognitive dissonance around 'no GET but slowly increasing aerobic activity' might be more fruitful than asking them to recommission their entire guideline and look into the diagnostic criteria again. This...

As I understand it, the best results come from oils with both high levels of CBD and THC. You need above the legal amounts of THC to activate the most potent effects. So the stuff these people are using is overseas stuff that's much more potent.

You're right, of course. But I think criteria are important from an epistemological perspective. Patients want their illness to be validated.

This issue is far more complex than the petition and the Facebook note suggest. I'm not sure we gain anything by being reductive and not discussing the validity of multiple criteria honestly and openly. We don't have a biomarker so we need something accurate but not unworkable or too specific...

I think I remember this. Leave voters wanted to get rid of the ECHR for protecting terrorists etc, but it wasn't going to be affected by the vote anyway.

Yeah, we'll all be buggered. Not that the government ever listens to the courts anyway these days. The DWP does what it wants.