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Thank you @T&O.

I am several days into a frightening crash, symptoms more severe than usual. I am also extremely hungry, have eaten more including carbs despite being on mounjaro, the highest dose. I am also nauseous, breathless and struggling to get any sleep. Composing this very basic post is difficult so...

Further information from Case report 1. I shall be off the forum to rest completely for a while to recover from PEM. Hospital appointment at end of week. So I'll be unable to keep eye on campaign. ( edited)

Amount raised £6165 of £15,000 stretch target from 166 pledges Case Update no 1 from #Justicefor ME Wow! What an incredibly active weekend!! #Justice4ME is in only day three of its first call out for funding and has already raised 97% of the £6,000 target. These funds are essential to...

£5825 raised so far 158 pledges

https://www.crowdjustice.com/case/justice4me/ £5074 raised so far out of £6000. 28 days to go.

That would be wonderful. If anyone is in touch with this group, can they point out the need for a contact point? The case owner is by #Justice for ME. There are several endorsements from well known figures eg Anil. Whitney Dafoe, Jenny Jaques. Would you be willing to endorse @Jonathan Edwards...

"From https://www.crowdjustice.com/case/justice4me/ "We urgently need your support to make sure the specialist health and care services needed by everyone living with ME (Myalgic Encephalomyelitis) are provided without delay. After three years of consultation, the Government’s Final Delivery...

Mounjaro ( and other weight loss jabs) are creating a lot of news over here. From 1st Sept, it's quoted that prices of some doses of the mounjaro jab will triple so that many people will be unable to afford them. see...

From the results section of the paper (my bold) "Among those who reported the highest benefit of the treatment (≥6 on a scale 0–10, n = 8), QoL increased with 29 units on a 0–100 scale, ability to work increased with 14 units on a 0–100 scale, and the POTS score decreased with 26 points on a...

I take bisoprolol. Cardiologist was pleased with last echo and said 'keep doing what you're doing'. So I will. The OI isn't as bad as its worst but sometimes, when I first get up, I feel very unwell. I spend little time very upright, most time reclining. It's odd - the body seems to know without...

Do you mind saying how and by whom you got yours prescribed @Ryan31337 and the prior testing you had? I seem to remember you getting high levels of testing including by Dr Gall for ? Pots/ OI, and others I can't remember. Reducing the severity of Pem and its duration is huge. Did this happen as...

I feel that using the political system to advocate for ME is a crucial step which we fail to pursue sufficiently. My brain however doesn't exist at the moment. All my current pem has made my brain feel like treacle. Sticky, nothing flows. One achievement over the last few years has been to get...

For the record, long article about Maeve is on page 14 of the Sunday Times print copy, centre of the page. Large photo of Sarah Boothby at Maeve's grave with full length photo of Maeve superimposed. Headline " As Maeve lay dying in pain, they were pointing the finger at me." One or two points...

I was surprised at the significance of pain too. I do get a lot of pain but linked I thought mostly to musculoskeletal pain. Also pain from lipomas. Also spasmodic pain around shoulder blades. I have h(EDS). For the last 18 years I have been taking prescribed pain relief which might hide other...

Sunday Times online today ( bolding and print size from the article- front page online- article in Health). An extended description of the circumstances around Maeve's death, including discussion of FII. "As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s...

Has anyone posted from the Times today, print copy p 17 " Leading scientist blames medical misogyny for lack of ME research" https://www.thetimes.com/uk/scotland/article/chris-ponting-misogyny-me-research-c09hp0hfg ( online copy) Please delete if already posted. I'm not able to read today -...

This is from The Times Interview with Chris Ponting "Ponting said the study would enable medical researchers to have a “laser-like” focus on where to target treatments or repurpose existing drugs at a “breakneck speed”. He added: “I’m actually quite angry that this [genetic analysis] was not...

David Tuller talks to Oonagh Cousins about the ME Delivery Plan

Thank you to @Andy, Chris and all the Decode team. It was a very rewarding experience to be a participant. I hope other research teams take up the offer to access the datasets.