: TV casting call for people living with ME/CFS

Hello,

Has anyone else received email regarding

"TV casting call for people living with ME/CFS" ?

To do with running and jogging and ME

I've passed onto MEA, AfME and Physios for ME.

The TV folks appear to have the wrong end of the stick regarding ME and I've replied clearly giving some history and so forth

 

Dear Joan,

I’m contacting you from Electric Robin, an award-winning UK-based creative production company. You can find out more about us on our website: https://www.electric-robin.com.

We’re making an exciting new sports series for a major streamer presented by Paralympian Richard Whitehead MBE and broadcaster-turned-record-breaking marathon runner ####. The aim of this three-part documentary series is to explore and encourage greater inclusion in UK sports especially for people living with disabilities and members of the LGBTQ+ community. Each episode will feature contributors going on a journey of sporting discovery with ### and ###.

I’m wondering if any of Chester and Wirral Area ME Self-Help Group's members might be interested in applying for our exciting new casting call looking for runners living with non-visible disabilities, please? We are really keen to feature ME/CFS in our series as we know that access to sports is extremely challenging for people living with the condition. If you support people with other non-visible disabilities who enjoy running, they are very welcome to apply too as we are not fixed on the disabilities we will feature.

We understand that going for a jog is something that the vast majority of people living with ME/CFS can only dream about. But if there is someone you know who manages to go for a run when their condition allows, we would really like to talk to them about their experiences and the challenges facing people living with ME/CFS in accessing sports.

I’m wondering if you might be able to share our casting call with your members, please?

Attached is our casting flyer in regular and Instagram sizes and below is a social media post to go along with it, including hangtags, in case you would like to post it on your socials. If you could keep who the presenters are a secret for now that would be wonderful, thank you.

RUNNERS WITH NON-VISIBLE DISABILITIES: Do you live with ME/CFS, anxiety and/or depression, dyspraxia, or sickle cell disease and love running? A new sports series for a major streamer would like to hear from you! #casting #castingcall #running #run #me #cfs #depression #anxiety #mentalhealth #dyspraxia #sicklecell #disability #disabledsports

Please let me know if you’ve any questions. I’m very happy to chat on the phone or over a video call. Any help you can give spreading the word will be greatly appreciated.

##

I replied with:

Dear Janet,

Many thanks for getting in touch with me.

I'm not sure pwME would realistically be able to take part as exercise (and even minor activity) intolerance followed by post exertional malaise (PEM) and worsening of all other debilitating symptoms is the core feature of the condition. So, running or jogging would be, like you say, be a dream.

If the focus would be on how ME stops patients completely from being able to do the sports that they love then that'd be different. Do you understand the difference? It is vital that you do.

Also, I notice in the flyer you refer to chronic fatigue syndrome. This name has caused a great deal of issues as some people with chronic fatigue (CF) due to all sorts of conditions have been mistakenly diagnosed. Some of those folks recover with some kinds of exercise……

Also, there is a dreadful history of the medical professional psychologising pwME and insisting that they undertake Graded Exercise Therapy (GET). This has been diabolical for many pwME. Many develop severe and very severe ME as a result. The 2021 NICE guidelines changed to remove GET but a great deal of harm over decades has been done. Therefore, this is a hugely tender point for the ME community, and I am not sure from the flyer that you are aware of this.

I cannot think of a single pwME who can go for a run. It's not something pwME can do. If they could, they would not have ME, if that makes sense.

Are you in touch with Physios for ME? Action for ME? The ME Association?

Would you like me to send you over some information and guidance

Warm regards

##
I forwarded to Charles Shepherd, Sonya Chowdhury and Physios for ME.

 

I really, really hope you ge a polite apology. I’m sure they think they’re being brilliantly inclusive.

I wonder whether they would be up for paying for and filming CPET test? I doubt it.

 

Blimey, they're clueless, aren't they? I'd question the professionalism of a company that can't even be bothered to read a few paragraphs of background information about a condition before they start sending out hilariously inappropriate invitations. Next: ice skating for the over-90s.

 

But exercise is good! Just because you can’t do it, or it makes you incredibly unwell isn’t a reason to slack off!

I so wish I was a fly on the wall at that brainstorming session
“Right, Paralympics have shown that sport is for everyone! Which conditions are under-represented in sport?

Are they going to suggest “just a little attempt” at digesting wheat to coeliac patients? A lick of. Peanut to someone with an allergy (who would just love to eat a peanut butter sandwich, that’s their dream). Honestly.

 

Yes. I read it as maybe they had a template and someone got tasked with listing non/non-visible disabilities and because of the olde (even heard Whitty saying it at some point I’m sure) phrase ‘there’s no condition that isn’t helped by exercise’ or something similar and that loads of conditions like cerebral palsy, learning disability etc are trying to increase access … well they just didn’t think to check fir an outlier they wouldn’t know existed if they don’t know ME/CFS

if so then you never know it could be a good chance to educate someone who doesn’t know. I lt also is just a reminder to us how few people even really know the name ME/CFS or know what it is - which is better than knowing the BPS tropes, but sadly people tend to go from one to the other very quickly because after I’ve told them (even with pre warnings) they just look up the nhs page and then start talking to me like I didn’t know my own mind.

if someone convincing like physios fir me and workwell foundation (sounds a really interesting sidebar indeed of COET two day stuff etc if not for this exact programme maybe for the same team to know about if they are sports specific as a contact or inspiration should something else crop up) maybe just maybe …

Or of course it could just be the same old … and we’ve been there before

 

Is it worth getting in touch with the presenters too just offering more info and being gently enlightening. As a Paralympian or someone who has had to contend with serious illness there is a chance they are interested and it’s their face on the show etc

tbf it’s an interesting twist if they had an episode that came across an illness that was different. I’m genuinely not being funny in saying I’m assuming they realise it will/would be totally formulaic if it was the same thing with just slightly different struggles to overcome’ fir episode after episode.

sadly for ME/CFS it’s the ultimate struggle of increasing beyond your threshold making your health worse and ergo able to do LESS exercise longer term. Which is so counter intuitive many pwme have to find out gif themselves. The issue is whether the format will miss that part. Are they going to see the ‘at home’ increasing issues if they occur and people have to begin cutting out other things to do the same run they managed a few months before.

it’s worth noting that yes some might still be able to complete a run but yes they will get PEM (but just be used to putting up with it and perhaps not realising or whatnot) the workwell video with the marathon runner who thought she might get fitter then came back to be tested is also a classic ‘pwme’ thing

 

My worry is that they will find someone who says they have ME and can still go for a short run and that will be incredibly dangerous as viewers with ME might then think they should be doing the same and make themselves worse. They need to understand that they could do real harm with this.

 

This. All the well-meaning friends and relatives saying "But that person on that TV show said it made them feel so much better! Are you sure you couldn't just try...?"

 

I don’t think it’s out the realms of possibility that people think pwme exercise when a video made and shared by the “World ME Alliance” in may, has someone on a push bike with a bike helmet on. The charities have been selling inspiration porn for years - Beth French as one example with Action for ME spotlighting her and the ME Association sharing the story as inspiration and people commenting that “recovery is possible” despite by her own admission that Beth never had PESE. There have been lots of examples over the years. It is no wonder people are confused.

 

Should you maybe respect her wish to not publicize the presenter? If you're trying to keep a productive dialogue with her, it won't help if you ignore that request. Maybe I'm misunderstanding something since you censored the other name.

Edit: This came across pretty accusatory, sorry about that.

 

I blanked out the presenters mentioned.
Janet is I think a producer or similar.

 

I think you missed one in the sentence beginning "We’re making an exciting new sports series".

 

When I was mild I started jogging again. I also started cycling too. Never as far as I used to, never as regularly as I used to, it was good 6 months. The crash was bad. Never did either again, it’s been over a decade.

it’s absolutely possible to have a period of remission or improvement. I wish I’d known that’s all it was.

 

All of the above.

I think they'll have no trouble at all finding someone. Someone who is either very mildly affected (eg somewhat recovered) or someone who has a label of ME/CFS but has no PEM at all
or someone who has "recovered" & wants to promote brain training or whatever (enter Rachael the LP promoter from therecent radio prog)

Its not rare that I see people promoted on MEA fb doing some challenge or other to raise funds for them - 3 peaks or cycling a distance or running etc, who have been dx with ME/CFS, i never know what to make of it.

I have also seen on occasion members here saying they run/jog walk long distances because they are much improved from their previous level

Pls note i am not knocking anyone or questioning their diagnosis.

Just suggesting that when they do find someone, whomever it is, and whatever they say, it will not be good for us in general. It will be good for the person no doubt "look at them arent they marvellous", but it will not be good for us.

Because regardless of the caveats they may be put in (in the programme equivalent of small print) such as "i was much worse than this before/some people are much worse, more severe than me", those caveats will not be heard as loud as the message of 'look at these wonderful courageous, brave, determined, motivated etc etc people, arent they amazing!"....
"so.... tell me again, why cant you work/do your own laundry?"

Que our national charities promoting this as a 'great way to raise awareness of ME on national tv!'

<sigh>

Edited to add: sorry forgot to say Well done & thanks to @Joan Crawford for responding so well

 

The NICE guidance states exercise- physical activity should be overseen by ME/CFS specialist

https://www.nice.org.uk/guidance/ng...#incorporating-physical-activity-and-exercise

 

THIS


Yep - all of what @JemPD said.

We've had the 'Woman with ME (or CFS) swimming around the Isle of Thanet' with copious publicity, the 'How many 1/2 marathons can a young woman with CFS train for and run in a summer', that one to raise money for the MEA. We are yet to have 'I climbed Everest/Rowed the Atlantic/Cycled across Asia/Hiked to the South Pole while carrying all my equipment/ while recovering from ME' ... but don't hold your hopes that it will never happen ..... with publicity publicity publicity.


The phenomenon of people who say they have/ or say they are recovering from, ME, doing well publicized physical effort challenges .... it's always good for the individual doing it, ego boosts, getting to feel like a role model, being special, raising money for something or other, highly flattering publicity, etc etc.


But it's NEVER good for the vast majority of ME sufferers.


There was an instance many years ago when a woman who had been diagnosed with ME announced on an ME forum (and seeking publicity) that she was going to walk the Inca Trail (High altitude hiking to Machu Picchu) and was 'in training' for the challenge.


People with ME on the forum begged her to think carefully and reconsider, for her own health. The woman proposing to do the high altitude hike swept aside all cautions. She insisted that she "was going to show people that she could". She never got to hike the Inca Trail because she collapsed while doing the physical training for it and was taken to hospital, having been determined to ignore all cautions.

.