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I don’t know if this term is widely used but in my organisation we used to say people (more senior managers) who would readily sign things off based on the covering one sheet document were just “top sheeting” relying on what had been presented without putting any effort in.

Am I seeing things as a paper that includes Chalder name on it it actually measures objective stuff. Presumably she’s there for expertise on her own quiz. I mean “widely used research questionnaire” :whistle:

Vile stuff ETA i eat loads of fennel though that’s yummy

Perhaps Ed Yong could do a follow up article about PACE

Would be good to have questions raised about SMILE trial would make a good contrast to the way families are being treated to put the safeguarding risks of LP under the microscope

I’m assuming that Parker hasn’t challenged Coyne about the content of his blog which would indicate he doesn’t want to draw attention to the issues raised. I’m sure if Parker had challenged Coyne would have written about it.

I did it. Tried to make full use of white space. Pity there isn’t a box at the end otherwise could have offered a critique of the survey. I’m wondering if they’ve gone with using the same wording for questions as the last survey to enable comparisons which would explain why it reads like...

How can we get this information to ME clinicians without individual patients having to be labelled bolshy? As the only person within the NHS that I’ve had any 1-1 contact with was a physio working at a CFS clinic who described AFME as “not too bad” it seems unlikely they would be open to...

Yes I reckon so as I don’t think most people in the public or in medicine would think extremely bad illness when they think about ME. Their knowledge is minimal at best you have personal experience and understanding. They will take the word mild on face value.

These Editors are presumably not at all worried about how unintelligent and ineffective it makes them look by taking 12 months or more in “consideration”. Have they not yet grasped that “consideration” isn’t going to make it go away.if we are still here next year they will look twice as ridiculous.

The point is very straightforward we may have relatively mild ME but we are NOT mildly ill. We have lost 50% of our functioning. If you call someone mild everyone thinks it means mildly ill. Nobody I have ever spoken to knows about severe or very severe ME until I tell them it exists...

Same position as me then something doesn’t feel right but not showing up on routine testing. I’ve been waiting for my hypertension review to raise it again to see what’s said.

Hi @philw44 have you discussed this stuff with GP I’m not a scientist or medic but if I’d been having shortness of breath and chest round my heart feels different -sore I would want to get it checked out. I’m not at all fit and even walking 5k would have me breathless and then I’d in bed for a...

I’ve got recent experience of being diagnosed and discovering I had “mild” ME I think this term can be counterproductive in terms of people understanding how ill they actually are and create unrealistic expectations about ability to get back to work/continue working. I think mild should be...

Maybe worth throwing in the shopping bag study under Jo Daniels as an example of the ridiculous “research” that goes on

Thanks @Trish i should have thought of that when I posted that table

Actually maybe these people should be the mild category. ETA maybe these would be in remission - would be good if there was a set number of years - 5? - that you had to be symptom free and functioning at previous levels - not adapting to the illness -before you could use recovery.

I think whatever levels description using words are they will start with mild. It needs to apply only to people who are functioning right at the top end of ME and managing to work without frqquent sick absence and drastic reduction in all other activitiesI think up to 20% disabled on the MEA...

This has a table showing levels which would seem probably more relevant for ME where progression doesnt apply in all cases https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4195109/ this is the url for the table I couldnt copy it to paste...

https://www.actionforme.org.uk/resources/questions-and-answers/what-are-the-details-of-the-brain-inflammation-phd-study-you-are-funding/ first part reads What's the brain inflammation study you're funding? Led by: Dr Neil Harrison, Reader in Neuropsychiatry and Neuroimaging, Brighton and Sussex...