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The joys of ME/CFS! :hug:

I may get this printed on a badge or t-shirt

I’m most interested in this, presumably this refers to their analysis of DecodeME data? And hope we get more clarity from PrecisionLife than we’ve had in some previous papers

Agree. It’s a useful framing for thinking and discussing. And tbh even if the effectiveness of a treatment was less dramatic if it was backed by evidence it would still be handled similarly. Look at the countless medications prescribed for management of other conditions.

I disagree. If there was a clear cut treatment the resistance to it wouldn’t stand a chance in the face of the evidence and the vast majority of healthcare practitioners would forget any misgivings they previously had. Most people in the NHS don’t wilfully want people to be ill or to suffer...

A few links which may be useful in helping understand some of the structures and responsibilities within the NHS. It’s obviously a topic with a lot of history and politics. But if we can try to avoid that and focus on understanding how things work and who we will need to persuade, convince or...

Not necessarily so. If there is clear evidence then it would be a simple job for NICE. A lot pf the decisions we see protests about are because, to be blunt, the evidence is not clear. There are treatments which drug companies charge vast sums for but have negligible advantages over cheaper...

I’m not sure the mechanisms exist to do that though. Or that medics would respond well to attempts to do such things. There may be advice from NHS England and if there is strong evidence this may be supported by guidance from NICE… But it relies upon different people in different places making...

It would depend entirely upon the GP. Or local integrated care boards. What NICE advises, if people follow that advice and what services the boards think they need and if they commission them… (Sorry I’m probably half answering your other post but they seem very linked in terms of NHS structures)

What would happen? Meetings How would it be rolled out? Unevenly I don’t mean that as a pessimistic view but that is usually how things go, even in the best cases. The covid vaccine example you gave shows what is possible, but it involves bypassing a lot of things so is unlikely to happen. And...

The lesson seems to be, don’t buy anything like this from any online marketplaces. Regulations in the UK and EU are generally quite good for medicines, food, etc. but we seem to let some companies ignore them.

Generous offer by the company and by you @ChronicallyOverIt thank you! Would love to see someone who can make use of this take you both up on it.

Great work and thanks again @Joan Crawford Good luck for the ride this weekend. Could be a bit of wind around, hopefully enough and in the right direction to give you a helping hand rather than cause any trouble.

Great, glad that helped @Jonathan Edwards Look forward to hearing more about the module and how your efforts at addressing any shortcomings go

Sounds like it could be your browser blocking a pop up window, as those are often used by nasty ads. Most browsers allow you to disable it for a website. Here’s the instructions for Chrome or let us know what browser you’re using and we may be able to help. Edit: Here’s guides for different...

I’m sceptical of the value of this commentary. It’s not from someone without their own conflicts of interest. It’s a website of a Chiropractor and Nutritionist writing on a website they run as a business to make money out of patients by claiming they can help them. It’s full of the buzzwords and...

I suppose the other aspect is what you’re into and perhaps where the interest from others is? Ultras and backyards seem to have a bit of a cult following and quite a social and community aspect too which may be something you/we could tap into? There seems to be no shortage of events around the...

To be fair that is a problem with those doing the commissioning of services not the clinics (the clinics have a whole load of other problems). Getting the Integrated Care Boards to both understand the needs of the populations they serve and what services are appropriate may be the best route...

Same. I have a lot of v unpleasant cardiovascular symptoms when bad. And have tried HR, BP and HRV to monitor. There’s something here I’m sure, but am not sure of the reliability of these measurements to demonstrate the relationship or of his methodology or the estimation formulas used. They do...

Probably my fault by linking to the Wikipedia page for Baroness Scott of Bybrook rather than Baroness Scott of Needham Market. Thanks for the correction @Suffolkres