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https://www.mssociety.org.uk/get-involved/campaign-with-us/campaigns-blog/what-do-governments-welfare-plans-mean-people-ms I attach this from the MS society. There is a petition which I will find. They mention fluctuating functionality in their communications here and on the petition so I...

MEAssociation looking for document feedback (FB)

@Ash I believe he is referring to Karen Gordon and the petition through Change set up by her Dad. Didn’t link petition as Nigel didn’t specifically name her in talk . That said it is worth noting his words about Karen as the NHS are still refusing to reply to the family let alone act and as he...

I enjoyed reading Cort’s article which helped me understand the machine learning approach and those diagrams a lot better.

Just watched Nigel Speight’s talk. He gives case examples and his first example is now featured in an online petition. He implored listeners to circulate and sign. He gave no name but clear who he means. This young lady has been through too much. Please sign if not already even if just to...

@EndME Last tweet from James Lab was recruiting pwME August 2022. Survey link in that tweet still works.

Just posting his tweet from 22/10/23 which links up to the thread study. Also screenshot for ease.

Van Elzakker responded to a tweet that he has been recruiting pwME since before the pandemic for this same study design but no one volunteered! (I find that hard to comprehend) I note from his talk on the symposium he selected the 12 LC according to the MEICC which he just labelled ICC.

From TwitterX a timeline of what this team has been doing and people involved. Posting for info and still feel a little dubious but can’t place it.

https://clinicaltrials.gov/study/NCT05911906?cond=Long COVID&intr=Remdesivir&rank=2 Adding this link to LC trial on Remdesivir. At least 3 people have queried if intention or desire is to add on a MECFS trial and Mark Faghy has been brief but very affirmative. Also included a comment by...

Moved posts from this thread BBC Article https://www.bbc.co.uk/news/uk-england-derbyshire-67081243 Antiviral treatment for 100 LC patients (2+ years) i think under Faghy. Comment by him and David Strain. Faghy posted on TwitterX. edited for spelling

Are Cochrane shutting down next year? If so will their stance on GET remain in the public domain and continue to influence beyond their closure?

:emoji_open_mouth:

https://britishlivertrust.org.uk/information-and-support/love-your-liver/free-liver-scan/ Don’t know if this is the best place to post but I know @mariovitali you have mentioned Fibro Scan before. In UK this roadshow by British Liver Trust is offering free Liver Fibro Scan. Only a few...

Next year is a big birthday for me so I’m thinking of an online birthday fundraiser. If I see another pwME do this I like to contribute because I know that these occasions can be very difficult and lonely. It’s a way of standing in solidarity at the loss of these normal life events. I know...

Looked like they wanted us to register for meeting. I thought registration wasn’t required anymore. Didn’t join.

Thank you especially to Chris Ponting for doing these interviews. Something on Radio Scotland too I think.

https://news.sky.com/story/amp/women-suffer-more-from-me-according-to-largest-ever-study-into-the-disease-12946224 Sky produced this instead. Reads a better than the Guardian article.

I would like to see effects of having a meal and dealing with ingestion/digestion. Could have impact on severe/ very severe pwME and their nutritional support.

The cognitive task (counting sevens) effect struck me. An extra thought was the descriptors of some of the moderate patients read as if they were tending more towards severe.