Search results

I really don't think glass ceiling is the right phrase here. I've given it just a quick skim (very quick!) and I think he's trying to say that there will be limits to what can be achieved by working groups unless DwME's advice is followed. But glass ceiling has specific connotations. It doesn't...

I'd be interested to compare the pwME who had a relative with autoimmd with those who had a relative with hematologic malignancies and those who had no affected relatives. Were they sudden/gradual onset? What is their severity? Have the improved/deteriorated since onset? Age/sex? There might be...

I have a first degree and second degree relative with hematologic malignancy. I know others with ME who have a first degree relative with hematologic malignancy. I'm glad this is being looked into. I've always felt that it could provide a clue as to who is likely to get ME or which ME pts might...

Personally, I would only apply to be a PAG member if it were possible to remain anonymous. There are plenty of reasons why people may want to remain anonymous. However, I can see both sides. It could be argued that being identifiable is a necessary part of the job and one of the requirements of...

Are there any conflicts of interest?

Fascinating!

MS and EBV covered in an article on the BBC today: Is a virus we all have causing multiple sclerosis? https://www.bbc.co.uk/news/health-61042598 I found this bit interesting: "There are several companies already working on an EBV vaccine, including Moderna, which is using the same technology...

Pollen and grass allergy symptoms often feel very similar to PEM to me, it's very difficult for me to distinguish between the two.

Who knows if anything will come of this particular treatment, it seems to be early stages as Jonathan says. But it seems like there is beginning to be more interest in the long term effects of EBV (and other viruses) and as so many people get ME after EBV, this can only be a good thing I think...

@Andy do you know if the latest webinar will be up on youtube or the blog soon? I want to share it with a non facebook user!

I second this! The DecodeME webinars and communication in general have been excellent and it's so reassuring to feel that the study is being done properly even if it is taking a bit longer than projected. I really appreciate the team's open communication and commitment to do things right rather...

I came here to post this! Fascinating stuff (with my surface level of understanding!) Also makes me think that there's bound to be an EBV vaccine soon and what a huge impact that could have.

Obviously the content and attitude expressed are completely appalling but I can't believe how bad the writing is!! The third paragraph is so laboured it's painful. The items in the list are not all learning objectives. The last sentence isn't a sentence. How did somebody who writes like this get...

I don't understand this, if it works for Long Covid, it will be in the drug company's interest to fund studies into whether it works for ME/CFS. Why should ME pts fund it?

I would hope that those with very severe ME at least would be classed as high risk.

Thanks @Simon M

I missed this and I did have a question that I wanted to ask. I wonder if anyone can answer. Will people taking medication be excluded from the study? Will it depend on the type of meditation or does it not matter if you are taking medication? The reason I'm wondering is that I take...

I think the email writer is within his rights to express his disagreement with and upset at Valerie's blog. I think in some ways I agree with him although I also agree with Valerie's blog on some points. However, he could have done a much better job at expressing himself! The tone of the emails...

Me too. I think many tech start ups are required to big themselves up in order to get funding and sometimes they make over blown claims. I hope that's not what's going on here. I guess we'll have to wait and see. I'm happy for them to go ahead and do the research but I'm not ok with them taking...

It may be that one of the main benefits of the rise in pv illness following covid for pwME is that there will be more interest and so more scrutiny of doctors, clinics and their methods. (Which imo is a BIG deal because I feel there's a LOT of exploitation in this area. Rooting out those who...