Search results

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.

Thanks @Adrian . Have you got any further persuading them that they need a dedicated website or webpage for comms? I saw on the most recent Forward-ME meeting minutes that FME discussed PAG's 'objection' to ME/CFS Delivery Plan comms going through FME (which I also don't think is a good idea)...

I'm under the care of an NHS rheumatologist, rather than an ME clinic or something of that nature. I'm still not entirely sure of his opinion of ME/CFS. He's a rheumatologist so I guess he primarily sees people with arthritis and other autoimmune diseases. He did mention GET once (and I...

I contacted the author over Twitter and the image has been updated. It's not the best, but it's definitely better!

It might *help* prevent, but most people don't do any sort of significant rest/convalescence and don't develop ME/CFS, which would suggest there are more powerful factors at play—ones that we might have little control over, such as genes and our microbiome.

Thanks, @Hutan

Hi @Andy This group, the Attitudes and Education Working Group, is one of three groups in the government's ME/CFS Delivery Plan. The other groups are the (UKCRC) Research working group and the Living With ME working group. There is also a Task and Finish Group which will oversee the project and...

The three working groups are up and running. I would direct the question to the ME/CFS Delivery Plan Research Working Group, which was initially called the UKCRC Subgroup on ME. I can't provide you with a link to a 'current position' because I'm not sure what exactly you're asking for, and I...

What is involved in getting a SIBO diagnosis, and do the NHS test for and diagnose this now?

I have tweeted about the issue of services blatantly ignoring the guideline. The tweet is not specifically about this instance—more my general thoughts on why the current approach (a letter from Charles) is not sufficient.

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...