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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.

This has been raised before. I have no idea why he repeats this idea.

That reads like a bad joke. And if we want to appeal the editor in chief is on the appeals panel. So bad luck if your complaint is about the editor in chief.

You're right, but any of us with long term worsening can't see into the future. Some people with very severe ME/CFS for years do gradually improve.

Two posts about bad experiences with LP have been moved to the LP discussion thread Posts about the BBC article and radio program have been moved to: BBC: Long Covid course [LP] is ‘exploiting people’, says ex-GB rower, 2024, article and radio program

A question on duration and scope of the project and funding: The orginal announcement of the project by the MEA, dated May 2023, says this: https://meassociation.org.uk/2023/05/me-association-funds-research-for-a-new-clinical-assessment-toolkit-in-nhs-me-cfs-specialist-services/ That suggests...

In out latest letter to Cochrane about harms we also formally presented the petition, including the list of organisations supporting the requests and asking them to read the comments on the petition.

Thank you for summarising our concerns so clearly. I feel like I'm going round in circles with this, and it's not good for my health. As I said on another thread on another topic, the Cochrane Exercise review fiasco, I feel like I'm shouting into a void and not an echo of a whisper is coming...

By all means start or join other symptoms threads. There are lots of threads already, so you may find one that fits, or you can start another one if you don't find one. The symptoms forums are all listed here: Symptoms and signs discussions And the members only forum is here: Symptoms and Signs...

Yes.

For a while before the pandemic I employed carers from a care agency. The care agency did six monthly reviews of their clients needs with the client and wrote it up and gave me a copy. In my case it was very simple, as all they needed to know was the nature of the tasks I would ask them to do...

I had a similar reaction, but I think the app and database was already set up for the nutritional stuff and when Covid came along they adapted it to use collect covid data.

There is a lot of emphasis in the above article and FAQ's on the project being patient led. That is, of course, a good thing if experienced patients who are accustomed to reviewing questionnaires related to ME/CFS are involved and listened to. My impression, and it's only an impression since I'm...

There is what seems to be a new article about this research project on the MEA website which was linked from today's email newsletter. I'm copying it here for ease of quoting and discussion: RESEARCH: CLINICAL ASSESSMENT TOOLKIT The ME Association is funding a study led by Prof Sarah Tyson of...