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That would hurt my arms.

What were you doing with your arms when you were going up/down the stairs? I find my arms hurt and tire easier than my legs. If I did stairs I would hurt them by either raising them to hold the bannister (I’m very short) or doing the Arm action we unconsciously do when going up stairs - elbows...

I am definitely disabled and always identify as disabled. So maybe it’s just me and three others in this data who think so? I do think the Visible data is useful but I’ve not been impressed with the recent findings. I think it’s a case of good data in poor hands, though. It seems a bit “we’ve...

I think PIP and benefits is a really good demonstration of why people don’t slow down. Are you well enough to work? Yes, but I shouldn’t as it’s probably going to make me permanently disabled in a few years. Are you well enough to wash, dress, cook, walk etc yes but it tired me out and...

Oh my days. We’re researching the opinions of sick people now?

I agree with Trish. I think the BPS types have managed to weaponise the initial “oh yes I do feel a bit better” as evidence that we are needy, attention-seeking, perfectionist, high achieving moaners who just need CBT and yoga. I think that what we would describe as hopelessness, and the mental...

My point being this is a very narrow field, as it’s looking at women who do have ME/CFS or LC, don’t have migraines, can use a combined pill and do do so. I am actually getting a migraine

I don’t like that wording “terrific > bedridden” an emotion vs a physical disability, nice. Thanks.

https://me-pedia.org/wiki/Migraine#:~:text=Migraines%20commonly%20occur%20in%20people,a%20cohort%20of%20healthy%20controls. A 2011 study found higher incidence of migraine in CFS patients

Like many women who have migraines, I couldn’t use the combined pill. I’ve no idea what the crossover is of female+migraine+ME/CFS but I’m sure there is one. edit - ah rats, this is my data again! Sorry. They must have asked if I was on the pill etc when I enrolled.

The Guardian is a tabloid disguised as a broadsheet. It almost went under before Kath vainer brought it back from the brink with affiliate links and rage-baiting. It trades on its past reputation. It’s closer to the Daily Mail than you would think.

I’d posit they would lean toward higher antibodies, given it’s not the cleanest!

apologies, I was referring to GPs only

It’s not rocket science - do less than you’re able to and don’t exercise. That’s pretty memorable. They just don’t like the idea.

Yes. But only because they have a “distressed personality” and everything causes them excessive distress.

It reminds me of the doctors under the Maoist rule. They couldn’t diagnose depression in their patient as that was a dissident political act, to be in any way discontent with the magnificent regime, and the patient would be arrested. We all just need to pretend not to be ill.

Simple. If you’re in widespread pain of unknown source and you think about it, have feelings about it or it affects your behaviours, it’s excessive. If you just keep quiet and don’t seek treatment, assistance, research etc it’s not excessive. If you bother a medic, it’s excessive.

The shrinking “blame gap” is one reason we will never see a proper pacing trial. Although, I guess if you don’t feel better, you’re doing it wrong! And we all don’t feel better…

I’d like to see some people design a pacing/energy management trial, then try to evaluate it, just for laughs. It’s such a poorly-defined “cookie cutter” concept which has quite little real-world basis. My imaginary pacing management study Part 1 - researchers set out an idea of a “baseline -at...

I was reassured by Sonia’s letter. I got the impression that whatever slack gatekeeping had been happening in the past was not going to be allowed going forward. I don’t think it’s too much to ask that our charities consider our needs before issuing guidance. I know in practice that isn’t...