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Thank you, a very helpful response!

I caught a winter vomiting bug a couple of months into sixth form, and afterwards began to suffer from eczema, dizzyness and blood sugar 'crashes'. Struggled to get up for sixth form. Then at 19 over the winter period I developed insomnia, hypersomnia when I actually did manage to sleep, and...

This is the most traumatising thing to me too. I have spent so much time talking to my therapist about it (when I can tolerate short phone calls), and it ironically all could have been avoided if my GP wasn't so concerned about my mental health six years ago.

Is there any way we can better make the case for this kind of funding to those in power? I know people are trying and I'm not disparaging their efforts. It just seems like we need a breakthrough to convince them to fund a breakthrough, which is a catch-22 if ever there was one.

Yes agreed I want knowledgeable doctors and nurses not physio unless I have a specific issue that an ME literate physio can try and help with. My primary needs are to get educated care to get any other health issues I might have treated promptly and safely. When there is research to participate...

What do people actually mean when they say T Cell exhaustion?

It's bizarre to me that they don't see this. Ditto the UK and SequenceMEs potentially.

They have quite a lot of graphs and charts in the article - what they claim to have found would fit with a lot of what we discuss here. They claim to have found an increase in IFN-Y and IFN a/b, along with JAK 3 and complement c2 and c4, and they say: IL-6 has been coming up a lot lately...

The recent Led By Donkeys/Democracy for Sale expose contains a claim by former Tory MP Ben Howlett, the subject of the expose, that the Labour governments Life Sciences plan was drafted by Ben Howlett and his Chamber Group - a shady organisation providing cash for access services to (apparantly...

That's good news. Can you say whether the government seem receptive to this?

Agreed. And even if not recovered, a lot of people would still be somewhat functional with lives that were still fulfilling.

I'll outline my situation as I think it's illustrative. My partner and I began both to suffer from PEM after a strep infection at the start of 2017. But we had no idea what was wrong with us. We both had chronic tonsillitis after so we thought that was why we felt bad. Or we were catching colds...

My first thought when I read that title was 'oh just f-k off already!'

Will this study be doing home visits for severe pwME?

Fingers and toes crossed! Agreed, sadly. They have more work to do to redeem themselves in my eyes.

Oh i totally forgot to do this with my big give donation!

The question is how to we do this? I have limited resources as a severe person, but I want to do everything I can to ensure this happens. I am a writer, and will happy write or copy edit anything (of a reasonable length) that would help towards this end, be it social media posts or something...

This is great! But I really want to see the results of WILCO. And it goes to show that charities could fund at least part of SequenceME if it came down to it. I don't understand why that hasn't happened already. And as was pointed out on bluesky, it's absolutely insane that six years after the...

@Jonathan Edwards do you have any thoughts on how these five patients responded and what it might mean if it's not a placebo response? And did you ever hear back from Fluge when you emailed him about the possibility of anti CD38 being effective by another mechnism than LLPC depletion? It would...

I read that summary of their hypothesis last night and fwiw I have to say that subjectively their idea about it messing with blood flow definitely feels right in terms of how my symptoms feel and affect me.