Search results

PS Can the title of this thread be updated to reflect the name change. Thanks. From the mods: done

British Association of Clinicians in ME/CFS (BACME) is developing 3 new Advisory Groups as part of its Patient and Public Involvement commitment.

@Jonathan Edwards are you involved with the NICE implementation plan going forward, or has your involvement finished? I am a little apprehensive that this is being done behind closed doors. I believe on the patient side this is being coordinated by Forward-ME and involves a service specification...

I wouldn't wan't the word 'malaise' anywhere near the name for the illness/disease.

One of my pet hates is academic studies where the abstract does not tell you the most important result/conclusion of the study.

Will leave this here and go for my tea, as I'm in a horrendous mood and might say something I regret. Mod note: This post has been copied to the thread about the article here: Health Sense article: Why deny patients with chronic fatigue syndrome treatments that can help?, 2022, by Peter White

This post and a couple of replies copied from the Paul Garner thread. Will leave this here and go for my tea, as I'm in a horrendous mood and might say something I regret.

**puts down shopping bags and breaks into song**

Managed to get the updated BACME name, but still got it wrong! Pete Gladwell is one of the more active BACME members, and has been part of the dysregulation stuff.

I think this will be coming within the next few weeks.

I've been following this up with Sonya, and I am getting the impression that there has been an active decision not to publish the meeting minutes, and that this has come from Carol Monaghan. I do not think we're going to see the historical minutes or future minutes readily and timely added to...

I would not be surprised by this. I have all sorts of issue with my vision, and particularly visual processing. There hasn't been much work on vision/eyes and M.E—except a few studies at the University of Leicester.

https://onedrive.live.com/?authkey=%21AGlC5G370Oiz4%2D8&id=BF7ACC05412B947D%21688083&cid=BF7ACC05412B947D Historical minutes for 2020–2021 meetings, uploaded by a patient (more here...

It suggests shift in gear, and also ambition, which is much needed. We're not going to get anywhere with £100k here and £100k there. I hope this pays dividends.

I agree. You'd usually see this post in a university department where there might be numerous grant-winning staff who need a bit of help and overall vision/strategy. There are barely any funds to supervise! Mainly DecodeME, but that should surely be being done by someone at Edinburgh.

AfME are advertising for a Research Director. https://www.actionforme.org.uk/get-information/about-us/work-or-volunteer-with-us/ Research Director Hours of work: Full-time, 35hrs a week Location: Home-based or Keynsham office Salary: £50,000 Be honest, have you ever heard about M.E.? Many...

I'm impressed by the Coronavirus APPG website (https://www.appgcoronavirus.uk/). It looks like Best For Britain are providing the secretariat, and the fancy website, which is interesting. The ME Association and AfME have just confirmed that they are continuing to provide the secretariat for the...

I know Keith has struggled for funding. It is not easy in academia, and it's probably worse in field a like ME/CFS. But I have no idea what he's applied for, how his proposals were rated, and why they were rejected. I also don't know if he's applied for salaried positions such as fellowships. I...

I've not followed this, but there are further shenanigans involving IncellDx / Patterson, regarding some sort of blood draw clinic in the UK for long-covid and/or vaccine-injured people. It looks like each party is blaming each other.

Thanks, but I think the bereavement benefits are now only given to people who are under the State Pension age.