: TV casting call for people living with ME/CFS

I've seen "Chronic Fatigue Syndrome" mentioned in the same sentence as "Anxiety" and "Depression" before. But this is the first time I've seen Sickle Cell Disease mentioned in conjunction with all of those.

Is Sickle Cell the next condition to be brought under the BPS umbrella?
 
alex3619 said:

Totally. If I had been taught pacing at an early stage I would probably still be working and worth millions. Instead of poor. I might have also lived a "normal" life, though not a typical life.
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Of course that’s true in theory. But I was told that and yet those around me were left to have their own bigoted ideas and reach for the BPS stuff.

and the vulnerability of the illness (can’t just interview for something else, can’t move house easily, can’t do commutes) means being managed out is so easy. Just have someone parking in your space so you’ve a half mile walk each day or make someone fight for better lighting with strip light giving them migraines etc. with the amount of get out of jail free clauses the BACME and bps stuff gives everyone.

you soon realise you don’t have the same position in old job and are vulnerable because they know you can’t move and know your rights won’t be honoured as fir other disabilities and which buttons to push on exhausting you.

so I think your strength gets slowly work down anyway and each time you lose more it makes you even more vulnerable


It’s not like having another illness and you ask for a late start or adjustments and it results in better treatment. Many people might have been better just pretending they just came in late or joke about getting sundowning because the cfs deliberate misinformation just makes you the most over a barrel employee.

which has been the really sad bit.
 
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Arnie Pye said:
I've seen "Chronic Fatigue Syndrome" mentioned in the same sentence as "Anxiety" and "Depression" before. But this is the first time I've seen Sickle Cell Disease mentioned in conjunction with all of those.

Is Sickle Cell the next condition to be brought under the BPS umbrella?
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It’s terrible if so. I’ve found the following and don’t know whether it’s this and the rehab issue or not - quite insightful to be on outside looking in for another disease and not knowing if they are getting bps-ed (puts me in shoes of how some of the stuff about me/cfs might be read by those around me) https://www.hematology.org/newsroom/press-releases/2019/light-moderate-exercise-may-bring-benefits-for-sickle-cell-disease#:~:text=SCD affects how blood flows,known as vaso-occlusive crises.

in relation to the running /sports programme but it’s an interesting choice. It’s the one where eg if you get cold then it’s an agonising crisis they have to go to hospital for it’s one of the most painful things?

so alongside the irony of me/cfs (where I’ve seen some of the other advocate reaction and it reminds me we need to tighten up our responses because yes ‘many can’t run’ and probably nearly all of us shouldn’t certainly not as a hobby or self care, but how serious someone’s me/cfs is related to PEM and not their fitness if walking when not in PEM and I think we are doing a disservice to the ‘me/cfs isn’t being unfit’ but we need to get across by suggesting if someone is seen running once they must be very mild - it’s the hidden part of the condition)

.. then sickle cell seems another one which is actually probably‘doesn’t match well with’ running at all. Or jogging as a hobby.

I guess if done more as a science programme it could be a good way to get across the diseases

problem is if done as a disability bigotry mindset ‘aim of the game it to show nothing can’t be overcome’ you worry about manipulating outcomes.

I remember a friend years ago asking me about the ads for the Paralympics (super human type stuff) and whether I thought it was risking in laypersons the wrong message being taken up - I thought very important question

the difference is that with us we can’t magick energy and health and there isn’t some tenacious way around that to do a sport that is just about using energy and health. And the worst thing someone can do to us is the ‘deliberately don’t give them quite what they need so they have to do s bit more work than intended’, because instead of that making us fitter it gives us PEM and if it’s the attitude all the time makes us iller and iller until well some do die and many it is utter unimaginable debilitations - they just won’t see life again.

So it’s abuse. And very cruel. But because we complete it when the alternative at the time is an argument and still that thing overdoing us they don’t see they just taken maybe a week of our life with the BS ‘good intention’. That phrase should be banned or we should be allowed to retort with ‘but bad attitude to disability’

It’s not the same as adjusting your life and adjusting eg your way of running to ‘still run’ or find a new thing you can ace in if your old sport isn’t possible because of an arm issue or eg skiing with a guide when blind getting new skills.

and then anxiety and depression it’s the opposite as the others listed for the programme because apparently exercise routine makes that better and their health if don’t have eg me/cfs better. Whereas those with me/cfs might love running and be runners but any way if them doing it harms their health


So yes maybe the coeliac and gluten thing is the right track. Many CAN eat it but there will be short term pain snd symptoms that don’t do them/us much good. And those still so keen on doing it that they just plan around doing it and putting up with the payback then end up with long-term much worse health.

if someone with good intentions spiked a persons food outright at least they’d both know quickly. But if someone insidiously drip fed small amounts thinking ‘they’ll get used to it’ and worse increased that slowly as the spiking weakened their body slowly. But because it was spiking or they just liked it that much the person pushed through thinking it was ‘just the days after after affects’ that were the issue. Could you imagine what six months if that would do?

what it’s NOT like is a coeliac ‘still being able to have nice meals’ and programmes on their tenacity to develop gluten free versions. Running is running for me/cfs - there isn’t a ‘gluten free’ special paced version? So not a good thing to encourage?
 
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Lou B Lou said:
'Janet Chute emailed me for the names of volunteers. After I explained why it would be dangerous and unethical for people with ME, she said the 'major ME charity' had already provided one of their members with ME as a participant. Could this be BACME?'
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That is extremely concerning. I can't imagine the MEA, AfME or MEAction being so stupid. Even if they can find a member with ME/CFS who can run, the message it sends to the audience is so harmful.
I hope someone has contacted these ME organisations and asked them to contact the organisers and withdraw any involvment of ME/CFS in the program.
 
The claims of the documentary producer, Janet Chute, are pretty weird. She claims to want to explore how people with non visible disabilities exercise, do running/jogging, so her documentary appears on the surface have a disability awareness theme.

BUT to feature at the top of the list of conditions THE illness characterised by abnormal and damaging physiological responses to exercise, displays the opposite of disability awareness, it displays what appears to be a determined ignorance of ME as a disabling illness AND the producer is refusing to listen to all the concerns from informed pwme. What happened to 'Nothing about us without us'?


AND of course, those little letters ME and CFS Always attracts publicity for any entrepreneur who wants to exploit the illness for their own ends.

.
 
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Trish said:
Anything from the MEA on this? There should be someone official explaining to the producers how harmful this is.
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I'm sorry to say i think its highly likely the MEA are the charity who've provided a volunteer. Hope i'm wrong but... if their fb page is anything to go by, I pretty sure they have members who do running etc.

Edited: seems i was wrong, very happy to be so! Apologies to the MEA
 
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