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I agree with every concern raised here. However, I think that if we come at patients as hard as JE has been coming at the issue in these threads, it will be percieved as an attack, rightly or wrongly. I think it's a matter of how we approach and what we expect to get out of it. I am of the...

Well that explains why I have been offered nothing except an online fatigue group course so far. Had to postpone my follow up the other day but it wasn't looking so positive for Suffolk ME services from the first meeting.

This is precisely why I think coming down really hard on patients who believe this stuff is a mistake. It's caused by the stigma and is a way to claim a sort of legitimacy and control over their situation. Why wouldn't they believe the doctors who believe them and tell them about all the...

This is the approach that all GPs took with me and that eventually destroyed my life and functioning. That was in the UK 2017-2020

Are there any plans to entice experts in these genes to study them in ME/CFS as with the UCL Ca10 people?

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.