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I think the “feel like…” is corporate speak. It is useful in a 1-1 or personal situation to acknowledge someone’s sense of a situation and/or their feelings. It is passive-aggressive in a corporate/formal situation to minimise someone’s complaint as a “feeling”. It recognises that point of...

I was recently in severe pain (same as most months) I looked on the internet. I’d rate my pain at 8 on the 1-10 pain scale. If I didn’t know it was period pain, I’d call an ambulance. Apparently it’s not a concern to have such pain for up to 3 days during menstruation. Intense pain, limiting...

I got eczema and hay fever for the first times in the 2 years before I became unwell (which is now the “start” of my ME) recently become allergic to my cat, also have the micropor tape irritation, can’t bear it!

This just reminded. I read “something” on the internet about sleep apnoea. It said one of the signs can be “controlling” behaviour. It was clearly referring to men. I thought that was interesting as it is traditionally a “male” problem (although it affects plenty of women) If you are having un...

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.