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I have been on a low dose of pregablin for 6 years. Ostensibly for anxiety that was infact a bad period where my MECFS symptoms were flaring and causing PEM and DPDR, but I didn't understand at the time. I have not had the courage to try and taper off now I'm severe. My partner was also put on...

Im not sure I'm aware of either of these connections?

This is really frustrating.

I also jerk awake in the night with a start reguarly. Once recently my partner came into my room in the early hours because I had yelled help in my sleep as I woke up. I couldn't remember doing it but often get sensations that might make one yell for help. A few days ago I had a very unpleasant...

When I wake up during the night I sometimes have bizarre neurological symtons when I'm half conciousness. It can be quite disconcerting to say the least.

I feel pretty bad when I wake up and horrendous on crash days. Dehydrated, groggy, foul taste in my mouth, takes me ages to come to. Sleep issues since late teens but this is markedly worse since MECFS onset a 26 and again worsening with severity.

I've been wondering- if CA10 is involved in ME/CFS (or pain disorders) could it (or whatever mechnistic process the CA10 gene finding represents) be directly modulated with drugs in order to stop whatever signals are causing PEM/pain etc? Or is it more of a pointer to the general pathology

I was referring to all of the findings that claim to have found some immunological difference or biomarker in LC. And I think Altmann wanted to find the ones that stood up to scrutiny (which yes, I can only think of a few that would be worth looking at imo) and replicate them in ME/CFS. But...

Is there any mechinism other than the obvious stated antiviral one by which Pemgarda could cause improvement? Like some off target effect on immune cells?

But surely he was talking about finding out which of the countless LC findings stand up to scrutiny e.g. the Elispot paper or say the x chromosome mouse one from a couple of months back and developing any that do into a test. I don't see what's unrealistic about that - obviously its not as...

That's an interesting idea.

I still think this is outrageous. That was the point I was trying to make. Psychobehavioural views stemming from Victorian era conceptions of hysteria etc would have been better.

Well why don't they just do exactly that? Deal with ME/CFS and not the other stuff? Plenty of people with other serious chronic illnesses have woo beliefs. They aren't denied basic care and treatment and research.

I never said it was. I agree there are big problems with the MCAS label. I believe Afrin even claims it causes autism. But there are a huge amount of pwME and LC with new onset allergy type symptoms triggered by a range of things. And many of them manage this with antihistamines. Some of them...

For the record the other week I ate a high histamine meal that wasn't spicy and the same thing happened. But I've also had it happen a few times recently when Ive stuck to diet but am in PEM.

Could this explain the gut issues in MECFS if the OLFM4 link proves genuine?

I have no wish to rehash the legal action thread unpleasantness here so all I will say is that what Wessely et al did with MECFS is if nothing else incredibly instructive and important in terms of the history of public health in this country.

I think if they cared that little there wouldn't have been the coordinated smear campaigns against the PACE reanalysis, NICE guideline and DecodeME. They are desperately trying to defend their legacy.

Absolutely. I mentioned this in the context of legal action once but even aside from that topic it is important for history.

I once proposed someone create an archive of what BPS types have said, because if there is a breakthrough they will scrabble to erase that stuff from existence...