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Yes, I think a direct quote is safer. Very good otherwise.

Some posts have been moved to: Whitney Dafoe Updates

Hilda Bastian has posted on her new Cochrane Stuff page saying she has submitted to Cochrane Comments about missing comments from previous versions of the review that should still be visible attached to the current version. Her post starts: more at link.

If anyone is writing to them, please can you ask them not to use the word fatigue for PEM. It's so misleading.

I suspect it's a decision by deaf people's organisations not to refer to deafness as a disability. I have done a quick bash through the questionnaire. I can't see the plan happening. It seems to require everyone applying for PIP's replacement to be provided with an advocate to help them...

Is there a link to the online survey?

I've only read the abstract. So maybe the patients were right, those who did not improve on self reported measures already knew at the start that the treatment would be useless. Those who improved on the self reported measures were more willing to be persuaded they had improved. So it seems...

I'm guessing this is a student project. It's too small and inconsequential to be serious paid for research.

Jake Hollis I wish you well, but please stop writing articles like this that may make you feel good about yourself and feel like you are helping, but which can cause enormous distress and harm to those of us not as fortunate as you to recover. Your story is not new or special, it is a...

Thank you Peter, you saved me having a rant as you have said most of it. Clinicians really have made a mess of conditions like ME/CFS. What we need is accessible medical care, diagnosis, straightforward statements that neither cause nor cure is known, and practical advice and help. Instead...

Hilda Bastian on Bluesky: https://bsky.app/profile/hildabast.bsky.social/post/3li6xkxp3bc2r ‪@hildabast.bsky.social‬ #CochraneStuff This is getting complicated, so I've started a page to keep track of what I post about the Cochrane Collaboration across platforms...

I think you have probably got it right, Hoopoe. This seems to be yet another example of the people lucky enough to recover from ME/CFS or LC who want to retrospectively claim special knowledge and insights led to their recovery. Fine if that helps them personally, and gives them a story to...

I find it bizarre that changes in numerical scores on a questionnaire are treated as though they are linear measurements and can be quoted as 52% improvement.

I haven't had an acknowledgement yet that they have received our complaint about the 2024 version. That was supposed to be done within 3 days, and it's over a week now.

My valentine's gift from Cochrane:

Thanks. So it looks like we discussed it in 2020 before the NICE guideline, and haven't discussed the 2022 update.

I'm not sure a factsheet would be the right way to convey that message. Maybe an article from someone with experience describing how patients can be useful as patient reps, and the pitfalls and need to be well informed. I think it's largely about whether the group, be it BACME or Cochrane, is...

I think all we need to tell patient reps and those appointing them is to join the forum. Once we have a set of factsheets and articles that should be a good resource to point researchers and patient reps towards.

Thanks, @InitialConditions. Definitely worth sharing again. Have you submitted it to BACME?

With great difficulty, especially as they have patient reps on the author group, so can say they have listened to patients. And it pretends to be NICE compliant.