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Good point. We've sent a follow up email just to clarify and make sure they've got everything needed - no response yet but can't imagine they'd reject a submission because of that! Thanks for the postive feedback all.

Your experience of ME services - Survey report by #MEAction UK Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/ Full report: https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf Results...

Got our submission in yesterday - phew. Rather glad it's done! You can read the full thing here: https://www.meaction.net/wp-content/uploads/2019/10/MEAction-submission-to-the-NICE-ME-CFS-call-for-evidence-consultation.pdf And please feel free to share our article about it...

Thanks for getting this @Barry! Will add it to our submission. I really do hope that the number of patient surveys showing pwme deteriorating after GET can somewhat balance Cochrane's latest outdated assertions - tho at least they now say they can't be sure if GET is or isn't harmful.

Yes! Cheers @Barry. Annoyingly it appears to just include results from an A4ME survey, without referencing which one, and doesn't collate other survey results, simply stating other studies by patient groups have similar findings.

The link to the APPG report is just taking me to a resources page on Action for ME's website. Anyone got the link to the actual report handy? (Doubt the report itself really fits the criteria but may mention other surveys that have been done.)

The National Archives was my only thought of a possible place they'd be, but no luck. - would be good to know if you do find anywhere.

Hi @trudeschei, just wondering if an English version of this report is imminent? I'm wanting to include it in #MEAction UK's submission to the National Institute for Health and Care Excellence as part of their call for evidence as they update the UK ME/CFS guidelines. I can do this including...

There is an option to choose "private clinic" under the drop down question asking which clinic you attended. And yes I see that is confusing - it was slightly a limitation with the software that we couldn't route people back to answer the same questions about a different clinic, so agreed...

Welcome to participate in Scotland - whilst true that Scotland has it's own statement of good practice all the government and NHS bodies are really looking to NICE to define what diagnosis, services and interventions should look like for people with ME. @Amw66

The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. Take the survey The...

Definitely is!

I'll add it to the list we're reviewing for the #MEAction UK submission, @adambeyoncelowe @Andy.

That template is available on the NICE website, all submissions have to follow it. It says:

Hi @Sarah94, yes they do cause a little pressure, not sure you'd be able to find a pair that don't, but it's significantly less than other pairs I've tried out.

Not so much me personally but as a team at #MEAction UK we are. I'll flag this up, and see if we can get a brief overview of what you've reported @Andy to her.

Have either you @ScottTriGuy or @JenB had the Short Synacthen Test done, looking at adrenal insufficiency? Only ask as I've just had this come back abnormal a few days ago, and wonder whether the pituitary gland could be implicated - more investigation to be done.

Livestream not quite as successful as previously, but I've uploaded the talks and Q&A session to YouTube. There are still a few pauses in the video, but if you wait it does start up again. Here's the talks with Dr Eliana Lucerda, Shennae O'Boyle and Kate Mudie: Here's the Q&A session...

Same, we'll get it up on YouTube afterwards, not sure what's gone wrong :(

Live now, direct link to livestream: https://www.facebook.com/SheffieldMEandFibromyalgiaGroup/videos/436526033841719/ I'll try to check back here and can send in questions if anyone has anything particular to ask about their speeches, or ask on the livestream chat where I'm more likely to pick...