BBC Radio Bristol - March 7 (available for 28 days)

[Sly Saint]

Starts around 2.11.00

John Darvall. Interview with ME sufferer (ME for 20 years) Liz, who participated in pre PACE Frenchay trial in 2002. Mentions PACE trial and GET being discredited, #MillionsMissing campaign. Also talks to her husband re NICE guidelines and debate in HofC.

good stuff.

short music break.

Interview with Clare Ogden from AfME.

JD talks about #MM in Bristol last year.......but of course AfME were not there

leave people to make up their own minds about the rest (ie AfMEs self-promotion).

JD poses some very good questions.

https://www.bbc.co.uk/sounds/play/p070nh1h

eta: he briefly, at the end, mentions Phil Hammond being an advocate for pwME. I think someone needs to fill him in on Crawleys work on GET.

 

[Cinders66]

JD is excellent. The program was informative, even a lady severe but not in the worst severity was able to show without energy, we have no life. Unfortunately it seems in AFME and other charity interests to present a rosy progesss picture. Whilst it was progress for enough MPs to care and get this debated in parliament with quite a high level of knowledge the outcome of the debate, which AFME know because it was discussed on their page , from the the minister involved was nothing, same old defence and justification of status quo. I’d prefer compete honesty to get a patient uprising for the millions missing protests,

Regarding #MM this year it’s about biomedical research funding...great. What will AFME be doing? I see mea are doing an awareness week stressing it’s real and physical which I thought had been done hundred times before ..l

 

[Barry]

JD is excellent. The program was informative, even a lady severe but not in the worst severity was able to show without energy, we have no life. Unfortunately it seems in AFME and other charity interests to present a rosy progesss picture. Whilst it was progress for enough MPs to care and get this debated in parliament with quite a high level of knowledge the outcome of the debate, which AFME know because it was discussed on their page , from the the minister involved was nothing, same old defence and justification of status quo. I’d prefer compete honesty to get a patient uprising for the millions missing protests,

Regarding #MM this year it’s about biomedical research funding...great. What will AFME be doing? I see mea are doing an awareness week stressing it’s real and physical which I thought had been done hundred times before ..l

Why do I worry that AfME seem to have a "business model" that, to me at least, seems to put their own self-promotion and eminence ahead of the real science that is needed to help pwME.

Discussion about the staffing and structure of AfME has been moved to this thread.

 

[DigitalDrifter]

@2:28:20 - He says people don't die of ME, she replies suicide rates are higher in ME patients. Does anyone have any official statistics on this?

 

[Cinders66]

@2:28:20 - He says people don't die of ME, she replies suicide rates are higher in ME patients. Does anyone have any official statistics on this?

The most recent research on this finding the 6x figure was I believe simon wessely paper

 

[rvallee]

He says people don't die of ME

This is such a poor argument. No one has ever died of full body paralysis either. Illness and disability have cascading effects that lead to increased mortality. When those effects are denied or not accommodated people die. One does not need to be burned to ashes to die from a fire. The fire itself can even be quite far away and still end up being deadly.

The effects of ME are denied and people die because of it. That's a fact. It's the neglect that kills, not the disease itself, and frankly that's 100x worse for those who make it happen, because they are the ones creating the conditions by which people die from a manageable disease that no one should die from. Those deaths are the direct result of this denial, it is blood on the hands of the deniers.

Also by that definition kidnapping someone and locking them in oubliettes for the rest of their lives is no biggie as long as they're kept alive. Dying isn't the only adverse outcome to a situation. A life of suffering is a damn serious situation and it's monstrous to deny and perpetuate this reality by willful choices.

"Locked-in syndrome is actually great, you get to spend all of your days in bed, worry-free" is definitely not as strong an argument as some people think it may be. It shows stupendous ignorance of the reality of illness and a great example of survivorship bias.

 

[Sly Saint]

https://www.s4me.info/threads/afme-...r-millionsmissing-contribution-should-be.3489

 

[phil_scottish_borders]

https://www.s4me.info/threads/afme-...r-millionsmissing-contribution-should-be.3489

not sure what specifically you are saying by posting a link to a whole thread, but AfME sent people to Geneva on May 12th last year (as discussed in the thread), and there was most definitely someone from AfME at Bristol #MM too, as i spoke to her prior to speaking to the reporter (who she also spoke to).

It is, of course, possible, for representatives from an organisation to be in two different places on the same day? (a saturday , too: part of these worker's weekends).

So, no: AfME were present at #MM 2018. Incidentally, if AfME organised a day of action, and other charities spoke about it in glowing terms, but weren't *actually* there, would you critique them, too? Just checking for bias.

 

[Sly Saint]

not sure what specifically you are saying by posting a link to a whole thread

I was too tired to give any kind of coherent response (am not that great at the moment); just wanted you to see what the general opinion of AfME doing the #MM thing in Geneva was.

Also that, although you say they were represented in Bristol, they (AfME) made no mention of it at the time, and in the radio interview #MM in Bristol was brought up by JD but they(AfME) only talked about the Geneva one.

It would have been an ideal opportunity to mention that a lot of bad ME/CFS research was being done in Bristol on CBT/GET on children.

they were also at #MM Bristol 2017

I dont' think there was a 2017 #MM

"AfME did not support or promote the Millions Missing campaign in 2017 and used alternatives but Sonya Chowdhury used the hashtag #MillionsMissing for fundraising for herself and AfME [21]."

https://me-pedia.org/wiki/Action_for_ME

Incidentally, if AfME organised a day of action, and other charities spoke about it in glowing terms, but weren't *actually* there, would you critique them, too?

I think you are missing the point.

I shan't debate this any further but there are several threads on Action for ME on this and other fora which maybe you should read.