The ME Show

Random thoughts

Plenty to cover about children with ME - treating parents as child abusers if they refuse GET - Tymes Trust

Doctors/medical
Professionals with ME eg Dr Hng diagnosed in 2016 has written ME and ME andhas a Facebook group I’m sure there are others

Dr Keith Geraghty researcher with ME on PACE reanalysis again there are others eg the woman at Newcastle who works with J Newton biomedical research

Severe ME folks - recent cases highlight the way people are mistreated ranging from being ignored to having their wishes ignored must be high on list

Impact on employment
The chronic illness project Catherine Hale are looking at how the assumptions in the social model of disability affects chronically ill people.

Risks of exercise - this has been known about for many years - MP who had ME and died was regularly using Parliament gym Brynmor John he died on 13 December 1988 so 30 years ago this year
 
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Some suggestions
Jane colby at Tymes Trust.
Cara Tomas - young researcher (with julia newton )
Jonathan Edwards
Cat Bell ( set up facebook support group for mothers of children with ME and went through significant medical issues both herself, and with her daughter - both are inspirational)
A GP/ GPs - there are good gps out there, sadly most do not have a clue, but some may wish to learn
Dr Amalok Bansal before he retires!
Dr Sarah Myhill ( may be controversial but she is both passionate and supportive) .
Merryn Crofts family if they are up for it
Dare i suggest Bob' s family?
Whilst podcast series can and must be positive, i think that there is also a responsibility to explore the dark reality too, to provide context - especially with the coming perfect storm of IAPT, mental health act revisions, illness categorisations ....
 
@Gary Burgess I think it would be grand at some point to do several segments about the politics of the disease, and the commercial interests driving those politics.

It could be interesting to invite Hillary Johnson on, as she is particularly well-versed in that area, at least stateside, and has written a comprehensive history of it so can provide fluency and detail. That could be followed up by more modern political influences, esp in the UK, including those behind MUS, "evidence-based", "functional", etc--which is a crucially important issue for all human beings in this age of monetization of everything with zero ethics or morality. This has created a dire and increasingly hostile circumstance for all disabled people, and potentially for anyone at all who presents with sympotms the medical establishment cannot--or refuses to--explain or treat.

And yes, when the family is ready, Robert Courtney's story.
 
Allele said:
@Gary Burgess I think it would be grand at some point to do several segments about the politics of the disease, and the commercial interests driving those politics.

It could be interesting to invite Hillary Johnson on, as she is particularly well-versed in that area, at least stateside, and has written a comprehensive history of it so can provide fluency and detail. That could be followed up by more modern political influences, esp in the UK, including those behind MUS, "evidence-based", "functional", etc--which is a crucially important issue for all human beings in this age of monetization of everything with zero ethics or morality. This has created a dire and increasingly hostile circumstance for all disabled people, and potentially for anyone at all who presents with sympotms the medical establishment cannot--or refuses to--explain or treat.

And yes, when the family is ready, Robert Courtney's story.
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I second all of this. The politics of ME is key.
 
Please don't make it light and fluffy Gary! (I'm not not saying that you would it's just a request...)

We need something for the informed and well read ME patient. People new to ME can learn a lot from this and get up to speed on important issues rather than spending years trying to work out what's wrong.
 
Thanks everyone. All feedback appreciated. To answer some specifics: I’ll definitely be covering the politics of it (one of my bugbears) and it’s not a light-and-fluffy podcast. The tone will vary based on guests but it’s not going to be sugar-coated or dumbed down. First one goes live Mon 7 May. Be kind!
 
Trish said:
I hope it goes well beyond the ME community - I assume the idea is public education, including, of course, the newly diagnosed or undiagnosed, as well as families, friends, doctors etc.
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I would echo this. Make it as public-facing as possible. Frankly we have Twitter and forums to talk about the same issues over and over, I couldn’t really care less about hearing about the same old thing if it’s intended for me. However, making ME an interesting topic for those that aren’t affected by it - much more valuable.
 
I think it would be good to highlight something around the difficulties getting insurance of any kind and employment difficulties
my problems were with the company income protection policy refusing to pay out when I returned to work (UNUM) and then when my employer realised that I wasn’t going to recover they made me redundant.

My home insurance legal cover didn’t pay out either so I couldn’t even take them to tribunal despite my case being very strong with loads of evidence etc.

I want to work and I can if I have reasonable adaptations ...trouble is there is no incentive for anyone to help make that happen ...and they take the medical care away from you as well...so you pretty are left on the scrap heap even when you are a mild case like myself.

This is ironic since the very thing that prevents people “getting back to work” is the fallout from the bps researchers who stated that their intention was to help this?
 
First episode: Jen Brea and Robert Saunders (with his song). Very good. Gary Burgess is so professional.

I identified with this from Jen at around the 20 min mark:
'I knew that if I were to allow myself to feel all the pain and all the grief and all the fear, it would have destroyed me physically.
I was completely incapable of crying. I mean, I would cry and then I would crash. So it was like 'No crying!'.
I developed these skills of trying to maintain an even keel and a distance in a way.
Even to this day I can not fully allow myself to feel everything that I have lost because the weight of that would crush me.'​
 
Hutan said:
First episode: Jen Brea and Robert Saunders (with his song). Very good. Gary Burgess is so professional.

I identified with this from Jen at around the 20 min mark:
'I knew that if I were to allow myself to feel all the pain and all the grief and all the fear, it would have destroyed me physically.
I was completely incapable of crying. I mean, I would cry and then I would crash. So it was like 'No crying!'.
I developed these skills of trying to maintain an even keel and a distance in a way.
Even to this day I can not fully allow myself to feel everything that I have lost because the weight of that would crush me.'​
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A form of pacing in its own right.
 
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