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I think Friday is a good day to release from a reporting view point, unless there are bigger news stories about. The Sunday papers are less constrained by whatever is momentarily on the top of the current 24 hour hour news churn, but feel part of their role is to take a more in-depth look at...

Charles Shepherd confirmed this

Dr Charles Shepherd said on the MEA Facebook page in a response to a comment on the announcement of tomorrow’s publication that they are getting ‘quite a lot of media interest already’. I guess a Friday publication means there can several days of reporting, including the Sunday papers, before...

The same for me. I am waiting till after David’s crowd funding is ended to decide what I can afford.

I notice that the changes to the August publication date and the various events while the pause has been happening, other than the roundtable event, do not make it to the time line, and no documents are listed relating to the pause, other than the the two relating to the roundtable event. It...

Interesting, just now need differences between ME and other fatigue inducing medical conditions, such as MS, too. [as well as replication with larger samples]

It will be interesting to see how prepared the various media outlets are? Will the SMC already have their expert opinions ready, will they have many experts willing to stand against the NICE evidence review process, who will roll out the same blaming anti science patient activist trope, or will...

Can I now complain that is not enough time to prepare? (Joke) Fantastic news!

Over twenty five years ago, when I was still working, I foolishly allowed my then line manager to pressure me into seeing her homeopath. There were so many red flags: the practitioner insisted that the treatment would work better if I did not know what he was prescribing, so the tinctures could...

What I am finding frustrating is not any further gap till publishing, but rather the failure now to announce the publication date that was presumably agreed on Tuesday. Giving warning of the date, even if it is weeks or longer away, is surely not problematic, as normally giving advance warning...

I always puzzle that just a one hour change can feel like significant jet lag. However, my social interaction is fairly limited, such that, though I alter my clocks, in relation to sleeping, eating, etc I can now just ignore the time changes.

Variability between people with ME and within the same person is significant, and I suspect there may be more than one factor determining this variability: Hypersomnia I experience hypersomnia at times when my ME feels like an active disease process, it was a feature of when my ME began, and it...

I had been hoping today there would have been an announcement of the timescale for publication, rather than the actual publication itself. I agree they will want to contact steak holders and sort press releases etc before publication. So though Friday might have been a possibility a longer...

Just checked the NICE site yet again, guess it is time to give up on expecting anything to be announced today.

Frustrating too that the top search result for ME/CFS on NICE’s site remains the 2007 guidelines, which, though containing a caveat about GET being under review, gives no clear indication that the guidelines have been completely rewritten and that the ones shown are immanently to become obsolete.

I am struggling to ration my checks of the NICE website to once every half hour as the day wears on.

At least we have confirmation that the guidance executive was meeting today. Presumably this meeting has now confirmed the publication date and agreed the steps necessary for publication to happen, ie who to notify and how, any press releases and the details of the clarifications arising from...

I assume also it is up to commissioning groups/bodies to specify compliance with guidelines when they are contracting for services. When I was referred to a specialist ME/CFS service my GP needed specific agreement from the local commissioning group (CCG) that they would pick up the bill...

Not in anyway a balanced survey technique, but it seems to me that on patient forums and social media it is already not uncommon to read comments from patients who are distressed as a result of encounters with the sleep police. There already seem to be specialist ME/CFS services that seek to...

Hopefully we will find out soon how NICE plan to launch and publicise the new guidelines, as part of the bigger publication package should cover implementation. However current confidentiality issues and the lack of information from NICE on their implementation plans make it hard for patient...