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No suprise that mitochondrial disease is involved. I think this will be a big theme going forward. Totally overlooked.

Devices usually measure this by default, and you can check it in settings. Or you can download third-party apps.

Someone once gave me a glucose / ketone monitor, but it was quite old and seemed like way too much faff to be worthwhile. The newer devices are much easier and might be worthwhile if you felt like diet and metabolism was an issue.

I don't measure anything, but I have in the past measured HR and HRV using a Polar chest strap and apps. In general, a chest strap gives more accurate readings than watches. There's a lot of material on the forum (and elsewhere online) about HRV — though I feel it is often overhyped. One thing...

Not diagnosed with this and therefore I can't offer much advice, but I would be interested to know what your symptoms are, and how it affects you, and how you distinguish it from overlapping ME symptoms?

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!