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That's true, but I think the qualifiers in the statement ('viral-like illness', 'appears') make it ok.

I'm just finalising a response to the draft long-Covid guidelines. Anyone have a figure for the estimated percentage of ME/CFS cases that have a viral cause? I see a figure of 72% on MEPedia but that is for viruses and bacterial infections. Second, was it ever shown that SARS-Cov resulted in...

I didn't think this was a great video. Could have been so much better. Not sure the battery charging to 85% is a good analogy. Try 50% max. Cardinal symptom given as 'extreme tiredness'... etc. And yes, it looks like a sub-set of long-covid patients have post-viral illness and will progress to...

Yes, it remains just a theoretical model. What benefit will inclusion of the 'biomedical complex systemic disease stuff' bring to the therapy program? aside from perhaps giving the clinicians a slightly better medical education of how individual symptoms may be explained by dysregulation of...

Merged thread It seems that this is a prevalent theme that will form part of—or perhaps the basis of—BACME's approach in the future. This has been brought up in a few threads already (including in the discussion threads on the new draft NICE guidelines), but it's probably deserving of its own...

I'm not sure this is the case, especially with drugs that act primarily in the brain.

https://www.meaction.net/2020/11/12/important-news-from-jennifer-brea/?fbclid=IwAR3_GgqUDp3qe3woHXjeH04-n_sdapO-xKepc1EvJ4Gz0TTvCLXmo12st0U "Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time...

I'm sure this point has been made earlier in this thread, or perhaps elsewhere, but this guideline revision takes quite a lot of stuff away but doesn't add much else. We are really left with self-management. Of course, this is much better than being given bad or potentially harmful advice, but...

They may be working on their response forms right now.

I found the document could have been formatted better, and the response form (a document based on tables in Word) is not ideal either.

Does anyone know if NICE are able to post out paper copies of the Guidelines? I do not have access to a printer, and staring at a laptop screen for hours on end is not an option for me.

Does anyone know if there is a template document for stakeholders to use for their responses to the draft guidelines?

As I've said earlier, these are great videos and a great resource for the community. Well executed, good quality, good content. Bravo!

https://www.theguardian.com/commentisfree/2020/nov/03/long-covid-time-recover This is a great article that focuses on the political dimension of rest and returning to work after long-Covid (or indeed any post-viral illness). The article also mentions ME/CFS and its relation to long-Covid. "In...

This is a bit of a shame because Forward-ME brought together the main/larger charities. It seems there may be some discord between those that run the US and UK camps of ME Action.

Yes - usually given at low doses (10–25 mg) as oppossed to 50–250 mg for depression. Within the NHS, this is often the first medication given when presenting with ME/CFS or fibromyalgia. As with most of the recommendations, the evidence base is slim to non-existent.

It's crazy that we are still learning about the other effects of drugs that are really widely prescribed. Apparently fluoxetine (an SSRI) has slight anti-viral properties.

I just started low dose amitriptyline for nocturnal bruxism which is affecting my jaw and my teeth. It seemed to help the first day or two, but I'm not sure after that. It is helping my IBS though, as it has done in the past, with dialing down any sense of urgency I usually get in the first hour...

Indeed. It's hard for me to take him seriously, which is a shame because I'm sure he means well.

Statement from ForwardME re spinal surgery https://www.meresearch.org.uk/forward-me-group-position-statement-re-spinal-surgery/?fbclid=IwAR1adrY5UppVfwslxNXq1QUV-tnzoTlQ727gqfxVLjuLr2Tu1yK_3GUE0b8