Search results

That doesn't seem reassuring - I mean where is test of public benefit [people with ME/CFS] for public money?

Unbelievable. Yea if what they are selling doesn't lead to improvement, measured by objective outcomes, then why give them the funding? As @Snow Leopard has said - why not give it to the patients? At least that way you'd cut out the useless middleman (Leif Kennair).

I think the GWAS study is a positive development - although I am bit frustrated that it's taken some time to get up and running. Also, there have been GWAS studies in other diseases for about 15 years*, so, as usual, there's been no prioritisation of ME/CFS. The GWAS study came about when MRC...

Yea when you look at the amount of money spent on maintaining healthy, useful people (OK not to people with ME but potentially others) to "treat" people with ME/CFS - for the interventions that don't work/are harmful you'd be better employed spending that on maintaining them in the community...

Well why not blacken her name via social media --- particularly if she's competing to be PM --- EU has set up a scoping study into poorly understood diseases with a high disease burden --- ME/CFS, Lyme, Long covid --- how does that sit with her policy as health minister? Get the ME/CFS, Lyme...

@Arvo @Snow Leopard My impression is that folks who go for psychological interventions are told to stay away from physical explanations - I assume this is because it would undermine the "benefits" of the psychological intervention. From the perspective of what gets funded by Government I recall...

Agree e.g. friend works with common food pathogens (bacteria) and one of the students (working in the lab) was infected. So in reality accidents are a fact of life even in research laboratories.

many CBT/GET practitioners would argue that this is beneficial regardless of how it was induced - But it's not a real benefit since it does not improve your health medium/long term. E.g. it wouldn't lead to a medium/long term increase in activity/ability to function normally - so is it really...

One answer is that they don't have family/friends who are affected by ME/CFS, so they don't care (was going to use another word). To them, this is just about getting funded --- for (flawed) research --- a friend who works as an administrator in a university says --- if you can't be part of the...

Yea you're right Cultural pressure is one hell of a drug- politicians echoing what the audience wants i.e. to get elected/re-elected!

Since I don't follow this closely I'm really just guessing here. The NICE review has uncovered a pile of poo - poor quality psychological and/or exercise studies which are unblinded an have subjective outcomes. On the face of it the next step is easy --- NICE works on the basis of evidence so...

Possibly another question - are the users of Cochrane actually answerable to anyone? After all if you base your decisions on unreliable data then you should be answerable for that!

Yea, you're supposed to read from a large dataset to (help) interpret the specific --- not the reverse! You would have thought that would have occurred to Paul Garner!

Don't really know because some cells rely on IDO1/2 and others do not --- not sure whether the effect would be to lower blood levels. EDIT - this* may support the view that blood levels would be affected by faulty IDO2 in liver --- but it may not that simple i.e. perhaps not all cells, which...

Not adding much here but Robert Phair's theory relates to intracellular [IDO2] conversion of tryptophan to kynurenine - not necessarily reflected in blood levels of kynurenine.

Thank you for this Jonathan. I've been meaning to highlight that Chris Armstrong and Robert Phair are looking for bistabilities/traps in amino acid metabolism and the TCA cycle; Robert Phair is working with Jonas Bergquist and his colleagues looking for traps in their vicious-cycle model of...

There's a Parliamentary (scrutiny) Committee - they have powers to calls "persons and papers" (roughly). So e.g. they can call senior officials in the Department to explain this. Also, the Committee can scrutinise the funding policy/decisions. Another route is a Parliamentary question. If you...

Where is the public funding coming from? It might be worth challenging the funding body --- is there a subjective [questionnaire] and an objective [actimetry - electronic activity monitoring] outcome indicator?

Scary --- if you look at the Newsnight program Garner was embarrassing. The two female scientists who were doing trials [presumably unblinded and with subjective outcomes] and just wanted to help people, seemed to be a more difficult group to challenge -- at least in terms of public perception.

Thanks @Caroline Struthers for doing this - I feel that I should be contacting my MP etc. --- talking to those who can influence. Again, I'm really not following all of this but if studies have been reviewed, and downgraded, then that should be reflected in the NICE Guidelines - or at least a...