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One of the things that occurs to me, e.g. from Jonathan's comments above, is that the underlying cause of ME/CFS and Lyme are likely the same --- thinking of Nath's reference to solve ME/CFS, Lyme or Long COVID - you'll solve the all!

Sadly true -- maybe there's a bit of self delusion (professionals delivering the service) --- we know it works --- but I don't think that is an acceptable position for those responsible for monitoring how effective this public service is (your tax!).

Yea - by even checking employment status/participation in education post 6 months, year --- you'd pick up that this wasn't delivering!

"not on his list" surely a completely unknow genetic fingerprint/organism would stick out like a sore thumb? DecodeME will hopefully provide clues in the near future, but I think Jonathan's take (common pathogen but aberrant immune response) is better fit at this point.

I think Jonathan's point (above) is interesting i.e. it could be something "normal" just that you're reacting to it - recent award to Ruth Ley comes to mind (here* & there's a thread on Science 4 ME) - Jonathan thought it was a good study to fund. I personally don't think the (true) pathogen...

I think a + signal in DecodeME [GWAS] would strengthen the case re immune response to a pathogen e.g. in Alzheimers [GWAS] immune genes turned up including one linked to gingivitis*. From memory Ian Lipkin did a large study looking for pathogens [looking for fragments of the pathogens genetic...

If I was assessing these interventions, i.e. to assess whether it was appropriate to fund them, then I'd try to: assess economic benefit -- if people recover and are able to return to work, increase hours worked to "normal" level, then that's an economic benefit. I'd look at "economic"...

I'd expect there are @Jonathan Edwards types - trying to provide better outcomes (and getting frustrated!). But yes, we need the charities to challenge the Government re funding the lighting process (e.g. reciting NICE's damming analysis - part of ME/CFS review) - Governments can delegate work...

Yip - particularly when the NHS is using already trialling/using them then they can't exactly be fringe! There was also research in Aberdeen University* and I'm sure umpteen research projects throughout the world - presumably the NHS Parkinson’s project is modelled on (Parkinson’s) projects...

Yip, brief look online years ago indicated that the (much poorer/early) wearable were better at assessing activity versus subjective "user reported" - how can we be having this debate (Sarah Tyson)?

Yea we need to be careful that perfection becomes our enemy --- the data needs to be good enough to say -- yes this persons activity has significantly improved (post intervention X) & that improvement is sustainable in the long term OR NO.

Ah me not keeping up/see the issue now - Sarah Tyson received £90K to develop a toolkit to assess clinical outcomes and it (solely) uses subjective outcome indicators - well blame lies primarily with ME Association. However, I'd also add that surely the "academic" (Sarah) should be objective ---...

"I think the main problem with blinding is that those receiving 500ml will be desperate for a pee within half an hour." --- laughing!

I know I'm quoting selectively from your post. @Jonathan Edwards was part of the MRC group which was asked to identify research opportunities for ME/CFS - this led to DecodeME [common genetic variants]. Hopefully DecodeME will identify drug targets (genes & pathways): I've been surprised to...

Actually I'd wondered if I should have worded that statement differently. E.g. I recall a brief spat I had with the charity which acted as secretariat to the then APPG [possibly close to 10 years ago (5-10 years)] - the charity told me that "there was evidence that some people benefited from GET...

I think these folks will sell their model for anything --- they've expanded into Long COVID? To be "fair" @Jonathan Edwards has pointed out that physios want to take over the world & he demonstrates a well founded scepticism of many medical professionals (including a number of his former...

Actually I wonder if the +ve is that you get to interact with someone - @Jonathan Edwards pointed out that carers/medical professionals could just incorporate that into their role/interaction with patients. Makes you wonder why they don't e.g. look at supporting people with occupational health...

Actually I wonder if it's worse than that i.e. the system has incentives that/encourages this crap - give patients something like this, get some +ve feedback on the evaluation forms --- some +ve's to base the trust chief executives bonus on!

Reminds me of an unsavoury character(s) who was languishing in prison (Romania?) who made money out of training the gullible - interesting that Parker gets the money upfront from the trainers!

Yea - I think part of it is understanding e.g. you've pointed out that when you visit a rural clinic in Switzerland, they have Doctors who work within a hospital setting who can diagnose and treat patients with run of the mill thigs - referral to other hospitals as needed. My point is that you...