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I can’t take ibuprofen at all due to being on anti hypertension medication (before being on the meds I would definitely use ibuprofen for any kind of pain but I didn’t have ME then. I do use paracetamol which reduces ME daily pain aching to a lower level than if I don’t take it.

You might think that but Cochrane couldn’t possibly comment. (Reference is to Francis Urqhart for those not au fait with 1990s BBC drama)

Definitely I’m worse if I get any kind of bug. To give my worst example in recent years Covid knocked me back for 3-4 weeks and then several more getting to some kind of usual level. I often can’t tell whether I’m having a PEM induced crash or I’ve got a bug. In the (10?) undiagnosed years it...

Maybe say over the counter painkillers as there are other prescription painkillers people use and supplements like CBD

Many thanks to @Karen Hargrave and the group at #ThereForME, now a signatory of the open letter to Cochrane.

Yes the McCrone et al PACE paper

Welcome to the forum @WAMES enquiries I hope someone here might be able to help point you towards some useful material on “dysregulation” to counter BACME

Why wouldn’t they have tested a separate group of people with moderate/severe fatigue

Most people with any severity of ME will get PEM from preparation to travel and the actual travel. But if you then have to be in a busy environment because a single room isn’t available the PEM will be exacerbated. It must be off the charts for someone very severely affected.

Orthostatic intolerance isn’t dependent on having low blood pressure. I have hypertension. I don’t know if my bp is increased or decreased when standing as I’ve never raised the issue with my gp as I doubt they can do anything. I do have difficulty queuing, can’t stand around at social...

Is it beyond the realms of possibility for a Dr or small team from St Marks to travel the 100 miles instead of Karen. that may be outside normal practice but surely there’s always scope to do something different in exceptional cases

I feel there’s some link to sleep timing as well, I find my mental and physical capacity probably at best 11pm onwards. I can manage ok in afternoons but I feel nearest to non ill late on. So in trying to sleep I’m fighting against my physical and mental energy

So sorry for them

Thanks for sharing this All I can say is I’m sending a big hug to you and to Chris

Using wearables since 2021 :whistle: Not rocket science……..

I was looking on my online medical records the other day for something else spotted that my record had been updated to reflect my flu/c19 jabs. I had forgotten to ask what type the C19 was when receiving it. Another Pfizer, I have had Pfizer every time.

Yes.

That insinuation I believe was actually operationalised in the PACE manual that dictated practice in the CFS/ME clinics. even in 2016,when knowing no details about PACE etc I attended the CFS/ME clinic, the Physio who led the sessions response to me taking in an AFME booklet and mentioning the...

If it looks like a duck :whistle:

Hence the description as “update”