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I note on this public thread that Hilda Bastian's talk page intended for people to be able to ask questions and raise issues about the IAG and the project for developing the new review has come back to life after a 2 month hiatus. A couple of links: Hilda's talk page Members only thread

That was a very worthwhile effort, @JohnTheJack.

I read the article. What it seems to boil down to is, we don't know how to diagnose or treat fibromyalgia, and drugs don't work, so patronise your patients and give them low quality generic GP and therapist BPS treatments and lifestyle advice.

I don't understand what point you are making. What have you tried to warn me about? And why me in particular?

I don't understand why a journalist has to give an example of someone who claims to have been cured in this context, or why you say in your article such anecdotes should be part of the story. Does that mean when you write about GET, explaining the flaws in the research, and saying that there's...

I don't think it's fair to blame Charles Shepherd for what others in the MEA do or say. He's one person, and does a huge amount of good work for the MEA and for pwME. The MEA seems, sadly, to have some less competent people acting on their behalf.

Discussed here: https://www.s4me.info/threads/usa-nih-national-institutes-of-health-news-next-events-may-28-2024.18724/page-22#post-532053

Studies listed in the UK look useless. Most are variations of exercises for breathing or fitness, there's also psychology, acupuncture, HRV biofeedback, and cognitive rehab. Edit: I have corrected this. When I tried the website I didn't realise the filter was set to select the UK. There are...

Typo, @dave30th. I assume you mean stable. A good article, but I wish you hadn't ended with this sentence: The story included is a weak one, as Joan Crawford explains in the responses. And there are other factors that make all such stories of success unreliable even as anecodotes for lots of...

If that is accurately quoted by the article's author, it's appalling. What on earth is happening to the MEA?

I have been told by someone who doesn't want to identify themself publicly that a few days after submitting the survey they were sent an email by Sarah Tyson with the link to do the follow up survey. Then they received another email saying to ignore it, as it was sent in error. I hope this...

If you only have the energy to read one of these articles, I recommend the first one by Long Covid Advocacy which is both better written and covers more aspects of the problem, including information on UK NHS LC clinics using some of the same brain training methods despite complete lack of evidence.

A post has been moved to USA: Senate NIH appropriations hearing May 23, 2024

That article looks like advertising. I wonder whether Parker paid for it, or sent out a press release that the writer has copied. Needs a response. I thought Russell Fleming was the MEA comms manager. We've been complaining about the MEA social media posting links to media uncritically for ages.

Can you link the post you're referring to please, so we can see the context.

The election is only 6 weeks away, so there will be a new crop of MP's the day after the election. Realistically, with the summer recess in July and August and party conferences in September, we're unlikely to see APPG's re starting until at least October, I suspect. As for the delivery plan...

I have just been reminding myself of FUNCAP. Here's our thread about it: https://www.s4me.info/threads/assessing-functional-capacity-in-me-cfs-a-patient-informed-questionnaire-2023-sommerfelt-et-al.35464/page-3 And here's a link to try it yourself: https://raffbenato.github.io/funcap55/ It's...

Some posts have been moved to: USA: Senate NIH appropriations hearing May 23, 2024

How incredibly dehumanising and patronising. How is this even allowed in these days of full access to our medical records. I will never fill in a questionnaire that goes in my medical records in future. Trust the expert, they know more about your health from a few answers to inadequate...

So basically, as I understand it, a decision was made not to withdraw the 2019 review some time in 2020/1 behind closed doors and with no public statement saying such a decision had been reached or the reasons for it. And further, any other requests to withdraw the review, even on new grounds...