BBC Radio Scotland: Brainwaves, "ME - The Invisible Disease"

I thought this was very good.

Main points:

- They spoke to the Belle & Sebastian guy, Charles Shepherd, Julia Newton
- Managed to get across illness severity through personal anecdotes and comparisons to other serious illnesses
- Talked about how there is no understanding of subtypes
- How the NICE guidelines are felt to be unfit for purpose by patients
- They spoke to David Butcher, the chairman of the Optimum Health Clinic. I'm sure people have opinions on this.
- Some people seem to get better but there seems no method to why, or why many stay ill, and there isn't any approved effective treatment

Edit: meant to mention, I feel like things like this are particularly good because while they may not say anything new to those in the know, they will paint a good picture to those who know nothing about the illness.

And with it being produced by the BBC, I'd be very happy sending this to say, a family member / friend who wanted to know more, as there's a certain level of quality or trustworthiness implied.
 
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Just listened; not bad. Little bit from Charles, OHC got a few plugs (mostly because of their recent research into the cost of ME), Julia Newton mentioned harrassment of researchers and people being put off doing research towards the end.
But it did pose some important questions as to why the illness is not being taken seriously.

It's available to listen to now.

eta: one point that IMO the presenter got wrong was that ME being classified as Neurological (she didn't mention WHO) that it [ME] had been somehow downgraded as psychosomatic.(ie she seemed to equate neurological with psychosomatic).
 
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Andy said:
Less about patient harassment, more about the establishment being unhelpful, insulting and obstructive to her and her research.
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What JN said:
"I wish I worked in a field where everybody pulled together, at the moment there is so much internal wrangling and arguing between the patient community, the clinical community and researcher community; I have researchers who won't come and work in the field, or have left the field because of the way that they've been treated. I've been and done talks in places where I've been shouted at and
humiliated."

"I've been ridiculed by my peers and I've done public meetings where I've been accused of being part of a conspiracy to treat this patient community in a very bad or negative way. When you spend lots of time writing funding applications that are not peer reviewed in a way that you would think they ought to be or you present things at meetings and people don't take you or your results seriously, then actually after a while you do begin to question whether it is all worth it".
 
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Sly Saint said:
"I wish I worked in a field where everybody pulled together, at the moment there is so much internal wrangling and arguing between the patient community, the clinical community and researcher community; I have researchers who won't come and work in the field, or have left the field because of the way that they've been treated.
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Broad non-specific complaint. Treated by who?

Sly Saint said:
I've been and done talks in places where I've been shouted at and humiliated."
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Broad non-specific complaint. Could be taken to be patients, but equally could be professional talks that she has done.

Sly Saint said:
"I've been ridiculed by my peers
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Complaint about the scientific community.

Sly Saint said:
I've done public meetings where I've been accused of being part of a conspiracy to treat this patient community in a very bad or negative way.
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Again vague. The word public could well imply it's the patient community though.

Sly Saint said:
When you spend lots of time writing funding applications that are not peer reviewed in a way that you would think they ought to be or you present things at meetings and people don't take you or your results seriously, then actually after a while you do begin to question whether it is all worth it".
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Complaint about the scientific community.

So I would say on balance that she is complaining principally about scientific establishment.
 
Sly Saint said:
When you spend lots of time writing funding applications that are not peer reviewed in a way that you would think they ought to be or you present things at meetings and people don't take you or your results seriously, then actually after a while you do begin to question whether it is all worth it.
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OK, but anyone in biomedical science feels like this. I suspect she was led into making comments of this sort by an editor who thought it was a good story. It is a pity that she mixes it all together really. Patients are sometimes vociferous because they are even more fed up to the back teeth than she is, and they have an illness as well. There are unnecessary divisions but the root cause is the BPS scam.... (Preaching to the converted here...)
 
Julia Newton couldn't see why patients would have concerns at the CMRC etc. I disagreed with her in this recording, almost excusing the bps focus by saying she didn't, at that time see what else research could have done, or something similar. I see her as a middle researcher, one foot in the good but some papers and presentations, CMRC with Crawley etc work have also rung caution bells plus she's a Fukuda user.

I will Post my MEA summary which was primarily disappointment as it seemed the similar as we always hear and the focus was supposed to have been research. I suspect many will disagree but I want clear movement forward in uk not just ruminating over the mess.
Mmm. Heat not light; focus on mystery, Debate & controversy for a change; Only interviewed mild or recovered sufferers; neither dr S or J Newton called up the gross failure of our national funders to properly invest and get the field going; the money invested in ME research wasn't contrasted as it could easily have been with other illnesses that are progressing; j Newton praised charities for funding her but didn't make clear that that the charities can invest are thousands, not the millions we need; drastic change in America vs uk (IOM report, SEID , NIH funding) wasn't mentioned; the most promising energy production research wasn't really explained so it all seemed vague; J Newton talked of no standard disease criteria whilst calling it CFS , we know she prefers Fukuda which ME patients don't like; J Newton unhelpfully had a patient bash which sounded like Crawley researchers driven out of field etc ; no mention of unrest or #millionsmissing and neither children or the severe were reflected enough. This could have been the 1990s really in many levels.
 
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I think it's very good.

Jonathan Edwards said:
There are unnecessary divisions but the root cause is the BPS scam....
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I would guess the bit about being shouted at and accusing her of being part of a conspiracy might be patients annoyed with her for being part of the CMRC, and therefore seen as supporting, or at least not challenging the BPS crowd. I seem to remember she has left the CMRC recently.
I agree it was a pity the bit about the difficulties all got muddled in together.
 
Dr Carrot said:
I thought this was very good.

Main points:

- They spoke to the Belle & Sebastian guy, Charles Shepherd, Julia Newton
- Managed to get across illness severity through personal anecdotes and comparisons to other serious illnesses
- Talked about how there is no understanding of subtypes
- How the NICE guidelines are felt to be unfit for purpose by patients
- They spoke to David Butcher, the chairman of the Optimum Health Clinic. I'm sure people have opinions on this.
- Some people seem to get better but there seems no method to why, or why many stay ill, and there isn't any approved effective treatment

Edit: meant to mention, I feel like things like this are particularly good because while they may not say anything new to those in the know, they will paint a good picture to those who know nothing about the illness.

And with it being produced by the BBC, I'd be very happy sending this to say, a family member / friend who wanted to know more, as there's a certain level of quality or trustworthiness implied.
Click to expand...
Radio scotland have at least one such programme/ year. The two previous ones have been on "Call Kaye" which are a feature and phone in - the response is always good and really underlines the " most common uncommon disease" aspect.
 
I thought Penny Latin did an excellent job of pulling it altogether though she got confused I think about NICE classifying ME as neurological. Good to see ME Research UK being mentioned. Thought Charles Shepherd and Julia Newton did a v good job explaining the illness and the politics and research to new listeners but much more could have been made of harms of psychiatry - I guess none of the psychs there to defend themselves. So they got off lightly. Was hard listening to Ciara talking about her worst, horrific bedridden times, I know Ciara from 80s/90s.
 
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