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This article https://www.thecanary.co/uk/2022/10/19/chronically-ill-people-have-had-to-protest-yet-again-for-basic-support/?utm_medium=Social&utm_source=Twitter#Echobox=1666186257-2 on the recent MillionsMissing protest in London states that patients are now lobbying the Wellcome Trust for...

Lumping everything together under one term was always going to cause mayhem. I said this way back in early 2021. It was clear that, at the very least, you could see two distinct groups of patients emerging: those with an illness that looks like PVFS/ME, and those that are suffering from or...

I don't know much about the IOM service, or Juan, but this is the type of work that clearly needs someone with a bit of know-how.

I would search the UKRI website for highlight notices / opportunities (https://www.ukri.org/opportunity/ — be sure to include 'Closed' in your search criteria). Here is one for ME/CFS: https://www.ukri.org/opportunity/researching-me-cfs-highlight-notice/ And then do the same on the NIHR website...

I agree. This would only be a good solution if we could count on medical staff to give an accurate picture of illness/disability. I suspect the person who started this petition does not live with a 'contested' illness.

A good article, but it's wrong to refer to preliminary findings from small studies as biomarkers, and I wish people wouldn't fall into the trap!

Indeed. Much of the science that gets posted here is shockingly bad, isn't it?

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) emerged at the end of 2019 and caused the devastating global pandemic of coronavirus disease 2019 (COVID-19), in part because of its ability to effectively suppress host cell responses1,2,3. In rare cases, viral proteins dampen...

I missed that there is a conference programme posted on the site. It would be good to get someone from @PhysiosforME or likewise to attend, and report back if possible.

BACME has a new and updated website: https://bacme.info/. It's an improvement on the old one, and includes some new content (but nothing of note). They are also advertising their November 2022 conference: https://bacme.info/event/bacme-2022-conference/. Non-BACME members can attend, but it's a...

I'm wondering if anyone has recent experience of the Liverpool ME/CFS service, particularly since the new NICE guideline was published? The webpages look like they are under development, so I can't see what they offer and if it's remotely worthwhile persuing a referral...

Other confusion is arising due to enrollees not realising that registering their interest last year is not the same as signing up. I don't think this was made particularly clear, as I was confused when I landed on the Decode sign-up page last week. If you see other patients saying they haven't...

I have been seeing a lot of frustration from people who don't meet the criteria for spit sample collection. I'm sure the team at Decode are aware of this. I'm wondering if this has the potential to become an issue over the next week or two, and even going forward... I don't think that's a good...

I've just completed. I found the survey clear and easy to complete. Well done to the team.

I think this probably refers to some work Peter White (F-ME) was doing looking at other (non-ME) charities and how they raise funds and invest. If you search recent minutes you might find exactly what it refers to. I suspect trying to get MEA to do anything radically different is a lost cause!

Minutes for August's Steering Group meeting: https://forward-me.co.uk/10th-august-2022/

There are a few threads on heart rate monitoring and wearables in this sub-form: https://www.s4me.info/forums/monitoring-and-pacing.222/ . This thread might be better there. Mod note: thread has now been merged, but other threads in this subforum do have useful information.

Agree. Was quite shocked to see this. Oversimplisitc, and wrong. If you've developed ME/CFS after SARS-Cov-2 then by definition you have long covid, so for these patients there's only one illness (and it has two names).

Yep, that could work. The issue with FME is that they don't have a social media presence and their website is not well known or well visited.

Yep, that's another issue: any benefit might only be sustained with long-term use. Not a long-term solution, really.