Search results

I’m always improving or declining to some extent. I wouldn’t say I’m “the same” for a whole 3 months, certainly not a whole 6 months.

No it was a general statement in line with comments Ive made on other threads recently.

Me too except it was a bit rubbish at the cold sores and did nothing for the ME either! It’s all well and good people having their own pet theories about ME, what causes it, what helps it, at the end of the day we don’t truly know yet. We don’t know if there are subtypes, or certain things will...

I have recently been thinking on these lines, the recent ones I recall are 1. The open letter to BACME which several members wrote. It can be somewhat distilled to “show me what science you are basing this on?” And further “it appears this is based on X, Y, Z which was debunked by A, B, C...

The level of deception and weaponised misunderstanding of language in relation to pacing, and ME/CFS in general, is very wearing. Pacing is the name of a strategy to manage (imagine I put manage in bold, caps, underlined etc) symptoms, in the absence of any firm knowledge, understanding or...

Neil just wanted us all to know that his anecdotal knowledge of “glandular fever causes ME” is more important than further genetic investigation into Long Covid and ME. As a comment, it’s not just lacking scientific rigour it’s also a failure of English language comprehension.

I don’t care what they think, they think our illness is caused by thoughts, they think people are interested in their comments…bit grandiose of them.

Yes that’s interesting, I had a period of complex grief and it didn’t cause PEM despite not eating/sleeping frequently crying and being half-mad for most of a year.

It’s sad but it’s true, there are so many patients on social media who are all in on “I got ME after an infection” and so only want to consider treatments related to infections, as many as there are “of course I was burned out and my body is full of inflammation, so I must to do yoga breathing...

And sadly some of those people will, in a decade or so, turn up here. Dejected, harmed, and now totally able to see they were sold a dream.

I agree but I also think our best hope is via the Forward ME buy-in JE mentioned. I don’t believe people or charities will come out and say something as negative as “scrap the lot, it’s more harm than good”. I also think we are somewhat different to the wider community- for example when I see...

That won’t fly with the community That’s not a firm position Even here we don’t really have a consensus, we have threads of discussions.

To convince them that there’s no point having an ME service? To convince them the current system is a fallacy and helps mainly the NHS employees more than patients? To convince them that a specialist consultant under which discipline should be in charge? Neuro? Infectious Diseases? There isn’t...

I don’t think they see it as doing a bad job, just that they need to do “better” and we know how the MEA wants to achieve that. More PROMS. Where are they being handed a firm “ask” on a plate? We might have ideas here, but we are not “all patients”. The ME community doesn’t have a firm ask...

I don’t think the charities want to criticise the NHS. I don’t think they have a firm “ask” in terms of what they want the NHS to provide, so they’re stuck in the “don't rock the boat, otherwise they will fall out with us, might as well keep what we have it’s better than nothing”.

I imagine there are survivors who have similar experiences to us, or not. Just like the general population.

ah yes, it does rather fall apart when you look at it like that. The thing is that it’s our fault for not being able to deal with stress, you see. All the war survivors, kidnapping victims, gang members etc are able to deal with stress the right way. We don’t. It may be because we are “type A”...

Why’s everyone getting in a snit, just agree to disagree and wait for a study to dis/prove a theory.

“Colours manically” sings “It’s not depression, I’m not depressed”

I don’t think it’s a bad thing