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I think this goes beyond the language used. As I pointed out earlier in this thread, it seems Richard is using DwME to indulge his myriad personal interests, which seem to span law, corporate management, computing, cybersecurity. I'm sure he has lots to bring to the table—perhaps too much. It...

That is my understanding too. There are at least two other working groups as part of the ME/CFS Delivery Plan. It might be worth starting a new thread for the whole project, but keeping this thread to discuss the specific research work.

Update: The conference planning has been put on hold due to the recent UK government ME/CFS Delivery Plan and, in particular, formation of the UKCRC Subgroup on ME. I don't think there will be a MERC conference in 2022. I hope there's a possibility of a conference next year as part of the...

I am not on the forum much at the moment as I'm in a crash, but PAG will co-chair the new subgroup on ME. This group is newly formed. Our involvement is nothing to do with Forward-ME. This has probably come from discussions that have been going on for some time between Sonya and co (probably...

Thanks. Yep, I have done a bit of interent searching over the years and myositis is the one thing that always comes up. But I don't think I have any overt signs.

This is interesting. I assume this refers to microscopic firmness, but on a macroscopic level my muscles have completely changed since I've had ME. My muscles are lumpy and toughened just under the skin, and this lumpiness can be associated with extreme tenderness. It feels like there is...

I'm happy to answer on this thread any questions you might have. And I'll try and make sure this thread is updated into the future with any updates.

Mod note: There are three groups in the UK government's ME/CFS Delivery Plan of which the Research Working Group is one. The other two groups, and the Delivery Plan as a whole are discussed on this thread: UK: UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group...

What do you think it would tell us that we don't already know/suspect? Because tinnitus is not well understood at all. I have read some of the main papers and theories, as I have with ME science, and there are some parallels in how the symptoms/conditions are understudied and not well...

I don't think Richard is suggesting that OP doesn't get it checked out, particularly as OP seems to be recovered/in remission. There is limited data on the prevalence rate of tinnitus in ME and LC, but they do suggest that tinnitus is common in both. The Dowsett paper in 1990 had auditory...

Sorry to hear you have developed tinnitus. I have severe tinnitus, with onset over ten years ago. If it's just starting, my advice would be don't panic and try and remain stress free. Not easy with such a horrendous symptom. But stress and anxiety can make tinnitus worse. There is no cure for...

Full text: Patients with myalgic encephalomyelitis (ME) can expect to see more research and support for the condition, which “has been neglected for far too long,” England’s health and social care secretary has said. Speaking at the launch of a report by the All Party Parliamentary Group on...

I have been off the forum for a few days, but I can say there was press lined up for Wednesday, but the Partygate stuff scuppered some of that.

Now received.

I am wondering if anyone has access to the Benefits & Work PIP Guide. I have an older version from when I subscribed, but would like to get hold of the newest version (version 55, April 2022) given some changes to the PIP2 form. Please message me if you can help. Thanks!

Yep. Seen a lot of this recently in the more vocal parts of the LC community. It's not helpful. I like this sentence from John Ioannidis. One study does not establish scientific fact. It's the start of the journey, not the end.

Someone is continuing to conflate their role in DwME with their personal interests and professional/corporate experience in unrelated sectors.

Yep, I use cognitive dysfunction/impairment.

These may be out of date, but they are the most recent of the files I have.

https://www.nice.org.uk/guidance/ng206