Search results

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...

No apology has been received from Sarah Tyson, and the MEA in the person of its chair of Trustees, Neil Riley, merely says our complaint about Sarah Tyson's post is 'noted' and they have full confidence in her. See their letter, a copy of which is posted in the letters thread...

I think either is fine. I agree it's good to keep a record and to note an action taken.

Many of them are posted on regional news threads, since, as you say, they don't warrant their own thread.

It was mentioned in the radio program. It's the NHS hospital in Scotland that does alt med like homeopathy.

Surely the abstract should highlight the huge drop out rate, which make the claims of success nonsense.

I think you're right, @Hutan, basically people will take from that program what they want to hear. People with Long Covid desperate to get better will latch onto that story of getting instantly better and think it must be worth a try. When I listened to her I heard someone who had only been sick...

I haven't tried the module but I have looked through the article which outlines what's in the module. My main comment is there's too much on possible causes, all unproven, and nothing as far as I can see about very severe ME/CFS. The general impression is of mild ME/CFS.