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How long do you think we are going to have to wait to find out if SequenceME got funded? Last I heard they were seeking funding in the states and maybe we'd know by end of November whether that was successful.

Do you know of any similar studies that have looked at JAK STAT pathways and Il-6 in non LC ME and come up negative?

No need to say anything, but thanks. I shared initially to show that there are myriad reasons why people might keep going back to the doctor, or not fully understand what is going on with them. Our story is particularly sad in that it happened to both of us but other than that I don't think it's...

After our bout of strep, both my partner and I developed chronic tonsillitis. Hers was much worse, with big white patches on her tonsils and within a year and a half they were in such a hideous state that doctors refused to perform an operation where she would need to be intubated until they...

I suppose we have to push for the right people to get involved. This is such an appalling situation.

Those pesky lymph nodes have a lot to answer for!

Which pathways/signals are you referring to here?

I think this is a very important point. It shouldn't be up to us to word things perfectly so NHS administrators and BACME can't twist our words and give us GET 3.0: Now With More Patronising Bullshit. Patients want to be treated by doctors who understand the condition and given adequate care...

Any word on how people respond?

In what way is it obvious?

That gives some creedence to the idea that NK cell separation in responders/non responders is related to drug action not disease mechnism.

Polybio recently announced a cervical lymph node tissue biopsy study in Long Covid, and @ME/CFS Science Blog said on BlueSky that they're not aware of anything similar happening in ME/CFS research. Info about the polybio study...

Beyond the immune exhaustion terminology misuse debacle, what is your read on this paper? They claim to have found some interesting stuff but I'm not qualified to assess whether they really have.

Thread for the study here:

Looks like this study is the reason the abrocitinib trial was created...

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...