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Is this a good or bad article? I daren't open it to find out.

Myalgia Carta?

What a beautiful poem! I've saved this in case I need it for a poetry workshop in future.

This too. My 'good sleep' is quite a bit worse than a healthy person's. Feeling refreshed has probably happened fewer than five times in the last year, and that's likely an overestimate.

I think if your unrefreshing sleep were to return without careful pacing, meds, etc, then you still have that symptom. It's just controlled, rather than removed/resolved. For me, my sleep is okay sometimes, and I can get good stretches of a few days at a time where I sleep well, but it's like...

I wonder, though, if the merger of AfME and the ME Trust is as a result of FME's aim to merge organisations where possible? So this may just be the first example we're seeing (a sort of test run), and FME might encourage/support other charities to merge in future?

Might this refer to the merger between AfME and the ME Trust?

It seems the article has been updated, because your comment about believing patients when they worsen as well as when they recover is there, as well as your comments about the step counters. However, the Forward ME press release for the 18th August had an unhelpful focus on the dualism...

Since journalists often ask the two parties to contribute quotes in isolation, there's never really a chance for one side to interrogate the other. In a news article, where the journo won't want to (overtly) editorialise, they end up not challenging this themselves in case it seems biased. It's...

We know Sharpe and Chalder will talk about dualism, so as long as charities keep bringing it up in their press releases, too, it will remain the primary 'debate' in the press. Both sides need to stop talking about it, but while it remains advantageous for one side to repeat that argument, the...

I think we should cut Tom a break. The second article clearly ends by saying it's not his own opinion. I think he just gave someone a right of reply after they complained, and so he aired their views as a counterbalance to the first article. At this stage, trying to correct him or swamp him...

An Amazon seller tried to bribe me. I told Amazon and they refunded the full price of the item AND my review stayed put. Most authors don't engage with bad reviews for their own wellbeing. But some go absolutely ape-shit. Kate Clanchy, a Scottish poet, wrote this book about the children she...

The more ignorant and lacking in self-awareness a person is, the more personally they take the slightest challenge, IMO.

Well he's clearly threatening you (and harassing you). Can you let his publisher know about his behaviour? Some authors have morality clauses which mean they can get dropped like a hot potato if they do anything dodgy or likely to bring the publisher into disrepute. Of course, if he wants to...

I don't think it was the PACE reanalysis. If you look at the NICE surveillance review in 2017, they flagged the IOM report, Montgomery v Lanarkshire Health Board (2015) and Keith Geraghty's paper on patient surveys (see Appendices B and C from the links upthread).

I was particularly frustrated by the surveys that had no option for 'never'. It was just 'a little of the time' or 'I'd rather not say'. What if you do want to say, but the options don't allow it?

So this suggests maybe a precursor group could have been a CG53 stakeholder before the two groups became BACME? The Clinical Network Co-ordinating Centres National Collaborative certainly sounds like something that would represent the interests of the clinics that had been set up ~2005-2006...

I'm probably misremembering, but I thought BACME was formed after the first English and Welsh clinics were funded in c.2005. It was basically all the founders of those clinics who came together to form BACME to represent their interests. But a quick Google suggests it was formed in 2009...

Or the British Association of Clinicians for ME/CFS (stays as BACME)?

I think this is a salient point. Many professionals couldn't join BACME before. Many of them might decide to do so now. Since the organisation represents its members, a broader range of members will mean it has a broader perspective, too. E.g., it might be quite a different organisation if...