: TV casting call for people living with ME/CFS

We have emailed the TV company:

Dear Janet,

we are a research, education and advocacy group aiming to improve physiotherapy management and understanding of ME/CFS.

We are aware that you have issued a casting call for people with ME/CFS, for a series on people with invisible disabilities who have issues in access to sport.

As physiotherapists, we promote exercise and physical activity in all areas of our clinical practice, and applaud the ethos of your proposed series for people with invisible disabilities.

However, we would strongly advise that you do not seek to include people with ME/CFS in this series. There are clear issues in access to sport for people with ME - and any other physical activity - but the issues are due to physiological dysfunction, for which there is currently no cure. Working with these patients requires a level of skill and understanding of this complex disease, and we are very concerned for the safety of anyone who may participate in this series.

You can read more about exercise and ME on our website here: https://www.physiosforme.com/what-about-exercise

We hope you take a responsible course of action - the casting call is already being very poorly received across patient communities, charities and health professionals involved in this area.

Kind regards,

Physios for ME

 

Excellent email @PhysiosforME thank you

 

They have said it’s not them advising on this.

https://twitter.com/user/status/1801526414023250221

 

thats a relief!

 

So which 'major ME charity' is it that's supporting this very ill advised venture? If it's not the MEA or AFME, and I'll bet it's not Invest in ME, or the 25% Group.

There are no 'major ME charities' left.

Whichever charity it is they are doing it secretly behind the scenes, have not made it public that they are encouraging such a damaging portrayal of ME. So who on earth are they? And why are they so quiet about it?

.

 

I think Jenny Wilson may have had it right in the tweet that @Lou B Lou posted—BACME. It's not a patient charity, of course, but the tweet doesn't say that it is. Just that it's a 'major charity'.

 

Who could approach BACME and ask them if they are supporting this ill advised documentary venture that will be so harmful for pwme, and ask if they put forward a patient to be the face of 'running with ME'.

 

Fact is that 99.99999999 (for eternity) of ME sufferers ARE invisible - invisible to Janet Chute and Electric Robin. We are also all Unheard by them. For them to claim their documentary has anything to do with 'Disability Inclusion' is obscene.

 

Are there any BACME members in this forum.?

 

There are promising treatments being developed. So, unlikely, fortunately.

But. And it's a big but. Six Mix-a-lot wouldn't deny. There's the new standard of a "functional overlay" that allows the quackery to be right, even when it's wrong. Because although blaming illness on the ghosts of dead aliens invading people's bodies and making them mentally ill (that's Scientology) is a bit too silly to contemplate in modern medicine, all you need to do is place the ghosts in the machine, doing magical brainy things, and you're all good. QED.

 

Are BACME a charity?

 

Would it be Sussex?

 

oh well, that'll most likely be it then, right up BACME's alley i'd have thought. ... lots of emphasis on "gradual" increases.

Edit: sorry, i was wrong again, they have confirmed they werent involved see Joans post on next page

 

Imagine the intersection of being fatigued by a very visible illness, and being marginalised because you’re black.

Studies have shown institutional racism towards black women in maternity services - dismissing pain, less likely to be given timely pain relief or medical intervention. Higher rate of preventable harms.
What a disenfranchised, voiceless area for the BPS to exploit, I will be watching this with interest.

 

I wonder which channel commissioned this/they’re trying to sell to?

BBC already got burned with the ear seeds backlash
C4 surely has enough disability awareness given their output

C5, ITV or Sky on the other hand…

 

I don't think it's a terrestrial channel at all. In the casting call, it says 'for a major streamer'—so possibly Netflix, Amazon, Apple, etc. It could also be one of the smaller ones that focus on particular types of output.

(I say that is if I know who they are, which is a bit rich considering I don't really watch anything except cricket!)