Search results

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.

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...