United Kingdom: Action for ME (AfME) news

Ah, makes sense, the next questions were skipped because I didn't have it. Alrighty then.

 

Thanks for sharing the survey. I will do it. I had suspected covid (I have had ME/CFS for over a decade) and am now much worse than ever. Been devastating xx

 

So sorry to hear that...

 

"Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME.

The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make the government aware of the impact that Covid-19 is having on people with ME and the need to provide effective support to those affected.

The initial findings, based on the first 220 responses, show clearly that Covid-19 had a significant impact on respondents. Over three quarters of the respondents said that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved. Not only have existing symptoms worsened, but over 70% of respondents reported that they had developed new symptoms, including shortness of breath, chest pain and dizziness."

https://www.meaction.net/2021/04/29/covid-19-has-worsened-our-me-report-survey-respondents/

 

"New 2-year £120,000 fellowship jointly funded by #actionforme and @PlzSolveCFS @CGATist and @lizworthey to work with postdoc research fellows to advance our understanding of the molecular basis of #MECFS Full story at actionforme.org.uk/news/trans-atl…"

 

"Join our ActforME Network and help drive change
People with M.E., carers and supporters are working together as part of the Act4ME Network to contribute to a real and lasting change for those living with M.E./CFS throughout the UK.

Our vision is a series of coordinated activities to raise awareness of M.E./CFS and put pressure on decision makers to prioritise the condition for increased funding and better awareness and understanding. These might include:

• tweeting or writing to your MP, MSP or AM to highlight a key issue
• asking a local decision-maker to add their support to a specific campaign
• sharing your insight and experience to inform a debate or consultation."

https://www.actionforme.org.uk/rese...mpaigning-for-change/join-our-act4me-network/

 

Now available on YouTube

Code:

https://youtu.be/P_CNLhYLWV8

https://www.youtube.com/watch?v=P_CNLhYLWV8

 

https://twitter.com/user/status/1410541730714337284

 

AfME's response can be found here.


(I couldn't find a version of the article online that I could link to, so I hope posting a screenshot of it is ok. Please let me know if it should be removed/edited.)

 

Do we know who made the complaint?

 

What a waste of everybody's energy, time and effort, which may well be the point. If complaints about charities are being made, I'd suggest the SMC as being a far more worthwhile target.

 

It's also the wrong time to do this. If it had been 2011, maybe. But how much of AfME today is the same as AfME then?

A cynical person might wonder if this is designed to eat up their resources at a crucial time (e.g., the release of the new NICE GL draft), but I don't think anyone in the position to do that is that clever.

More likely, this is a misguided ally who should've discussed this with others before acting. They probably thought they were being really clever at the time, but that's the ironic thing, isn't it?

 

I agree. The only positive I can find is the tone of article regarding PACE.

This is one of the first times I can remember the mainstream media being so critical of PACE. Generally they use words like "controversial" or "contested" rather than simply stating that it has been 'widely discredited'.

 

It is strange. It is hard to see the complaint as more than a diversionary tactic. What other tactical or strategic purpose could it serve? The charity commission is unlikely to take the matter seriously. The most obvious possible use is for someone, when the NICE guidelines are issued, to say that PACE was endorsed by a patient organisation, as evidenced by the recent complaint. It will be interesting to see who dares.

 

This is weird. Also misleading, NICE did not reverse their endorsement, the committee simply evaluated it, which did not happen in 2007 when it was rubberstamped as bestest ever. NICE the organization is very much still infatuated with PACE, although it does not "endorse" studies in a formal sense but it does that work through committees.

Either this is a very clever attempt to push the framing of PACE being discredited and allowing for the blame to be shifted to the right place? Way to place the "worst medical of the last century" in this, frankly no matter how odd this is interesting.

 

I think I do. if it's who I think, they had made similar representations to me about the need for an investigation of Action For ME about the PACE trial, and I had indicated I didn't see the point.

 

Thinking this through, the article looks very strange. It appears that it must be the person who filed the complaint who briefed the Telegraph. AfME apparently do not yet have full particulars of the alleged breach of duty. The only information given is that AfMe allegedly acted contrary to public interest in supporting the trial. well good luck with that. If there are other claims why were they not specified?

This looks vexatious.