The ME Association's continued support of the Sussex ME Society

They seem very keen to discuss yoga!! Are they looking to get it in the NICE guidelines as something positive that can be recommended for the mild to moderate instead of harsher GET ?

I’m not against it being explored at all, although personally I’m sick of talk of activity with so little done to get us treatments to enable us to do activity, what most of us want. Someone mentioned helping with flexibility in a life much reduced in activity, fair enough, maybe the strength side has a place too, I’m so severe it’s irrelevant to me and the yoga postures I tried years ago and felt ill after wasn’t designed for ME, but how often is it?

However With no discussion which severity they mean for and the intended application, do the active need strengthening exercises and aren’t the severe too weak?I’m not easy at the way MEA have handled this, they aren’t making clear it isn’t treatment, our issues with exercise make it less easy to extrapolate exercise /activity advice given to other chronic conditions etc. Language can mislead, it can be “helpful” in retaining flexibility with out improving in the ME or it can help with strength and exercise tolerance and improve function in some maybe. MaYbe I’m just so far removed from someone living a life with energy to spare to do it, I can’t appreciate it being something mild to moderate might be doing and have interest in.

Edit I realize the link I clicked on in blue was for the survey, it wasn’t the link to dr shepherds full explanation which I have just read. I have not the brain power to see if my comment is of any use still and some might be Misplaced, it seems mainly for the less severe they are talking and they do suggest forms and applications.

I would however add I’m unhappy dr S is still promoting MS yoga as justification for iT in ME when they’re so different and I wrote a lot on their Facebook on this point totally ignored. However MS illness yoga might be gentler and an example of how it can be modified

“MS symptoms can be similar to those experienced by people with M.E., and research into M.S. indicates that it could be of benefit“

What symptoms?

 

For breathing I don't need yoga sessions, and I don't need anybody helping me with "relaxed breathing" or relaxing.
By the way, we don't have relaxation or stress problems! I don't want Yoga here and there and everywhere. Yoga will not cure me or ME. I am a bit fed up with it, obviously. And a bit angry. I can tell you how darn often I was told to use Yoga or "other" relaxation techniques - where's relaxation in Yoga, apart from the lying down at the end of the session? - my problem is I have a disabling disease, not a bit of "stress", and I want a cure.

Anybody who wants to do Yoga is free to do so, I can understand some find it enjoyable - but, please, leave me alone with it. Or with swimming...or walking...or whatever light activity I wholeheartily disliked when I was healthy.

Sometimes I am not sure if people that suggest Yoga for everything actually know what Yoga is, or Pilates or...Sometimes I think they have never done it themselves - because...they are not stressed, so why yoga! Haha. But sure, Yoga is better than Pilates, more relaxation.

It would be grand to hear something new for a change - like the suggestion to play golf for relaxation. There's still the relaxation, but change needs tiny steps. Haha.

 

Yes I’m a bit mystified as to why yoga breathing and stretching vs any other eg a meditation CD. You need to have a busy ME life ie GETSET Julie? if doing yoga is the only me time /wind down you manage. And incidentally, relaxation classes were often quoted as the largely ineffective controls vs GET for cfs from what I recall. The physical side might have benefits but I’d want more precise advice and discussion than “it might do this and you might relax and your symptoms might improve”.... For me, the approach to Careful exercise in the states is better, carefully controlled, science based designed for ME than mystical yoga with many physical, mentall spiritual benefits vaguely implied. Fine if it floats your boat, enriches life etc but sometimes I feel the need in others to point to positive self management stuff out there, as there’s nothing else is there.

 

I agree @Andy. My concern re the article was that both PwME interviewed said that LP had resulted in or helped with their recovery from ME.

I am tempted to ask if CS read the whole article...?

 

Hahahaha

 

I think CS is sounding like he has a thankless task when he responds nowadays. He took a lot of flack from sticking it out “in the tent” and I’m not sure he came out of that debate feeling as warm to the community as he did before.

I feel inclined to cut him a bit of slack for some things though ...particularly as he clearly does a lot we don’t see and as he points out, this is in the main part a voluntary role and he does have ME.

I think when it comes to indirectly supporting the LP though that’s a deal breaker for me...yoga I think is also the thin end of the GET wedge and the contradiction makes me cringe. Perhaps they will take on board comments and deal with the issue behind the scenes. We will have to see I suppose.

 

Then maybe he can get someone to share what that is, it may help the community to know that. Otherwise, I'm not feeling the love when it comes to supporting PwME.

 

I agree ...but there’s not always a long list of volunteers to do or share the work....so,it’s a question of do we think the MEA represents us adequately ...I’m on the fence atm

 

I'm a bit fed up wth the MEA over their social media policy too - not issuing warnings etc (as in my post above)
But, while i think they have a blind spot over this particular issue, it's my overall impression that CS works very hard indeed fighting our corner, with the likes of the DWP, NICE, in parliament, meeting with & speaking to the media & working on all the literature that the MEA out out.
I dont get that impression because he or anyone else asserts it, but because i have just read, in passing, what he's been doing, it often involves travelling & as has been said, he is a sufferer himself. And while i dont always agree with his perspective on things, and the work he does isn't always fruitful, i personally think he works very hard & that especially in terms of Social Security benefits & leaning on NICE to review the guidelines, we'd be significantly worse off if he hadnt been there. AfME have done more harm than good with their cosying up to the PACE brigade etc, and in many of the press stories over the last 10 yrs CS' has been the quote that put our side across. So i for one am very grateful to him.

But yes the message given out is a bit inconsistent. I sometimes think that they are so busy defending their decision to share all articles/news good & bad (a position i agree with), to people who would prefer them to only say what they agree with.... that they cant really hear it when people challenge them in a more nuanced way. ie when people say "you shouldn't be putting up this story without caveats" they hear "you shouldn't be putting this story up, you are bad". It's like they've taken so much flak over the yrs that they've gone defensively deaf.

I dunno but it needs dealing with.

 

My problem with MEA being indiscriminate with what they put out there is that historically there was no balance in the media anywhere with regard to the reality of ME. For me, that should have been their job. ME has suffered from so much mean misinformation that being particular with regards to what is said through a charity seems reasonable.

People (general public and medics) already have deeply ingrained the idea of exercise (if they are aware at all). Their is no need to flog that horse. But there are still so many things that everyone can benefit from learning with regard to ME. For me it's just a matter of balance. Maybe one day the concept of exercise (how much and what kind) can be revisited but for now sharing anything on the topic lacks any validity-- there is not enough known about this to really say anything useful.

So why do it.

 

Just regarding Dr CS: he is a medical doctor so is a lot less replaceable than other people who could be active. He has also built up a lot of knowledge. A lot of people only stay active for a few years and move on. I have less confidence with most other doctors with regard to media interviews.

But I am no major fan of yoga being promoted for ME for reasons others have given.

 

Do they ask for volunteers? I’m not a me,bet but never see it on social media

 

Foggy brain but I think they have something in the magazine advertising for volunteers ...perhaps they need a Facebook/Twitter expert....although my experience of those is not good professionally

I think it’s changing, but you kind of give that social media stuff to the office junior/graduate who wants to be a brand manager one day ...result ...a bit embarrassing in terms of quality content, and there tends to be poor oversight because the content is so vast. Alternatively if you have a massive budget you farm it out to an agency (not feasible for the MEA I’m assuming). I think it’s quite time consuming editing content and it soon dries up once people realise that’s what’s happening. Im not sure what their arrangement is currently but I think they should just publish extracts from any social media that suits their communication objectives rather than a freeforall that they can’t and shouldn’t control (they may need to write a communication plan for that to work though).

 

In the member's magazine, they still ignore the additional concerns about the Sussex ME Society and promotion of LP.

 

That's pretty besides the point.

 

Why do they feel the need to point out that some MS patients (allegedly) find yoga helpful? What relevance does that have for our completely different condition? Sounds like the kind of thing sharpe would be rolling out on twitter.

I am very grateful for everything CS does personally and I’m not necessarily blaming him for this but the MEA need to sort this nonsense out as a group.

 

not posting the link to this recent article in West sussex paper as don't want to give it traffic

I imagine we might be seeing a lot more of these stories in favour of CBT/GET in the next few months.

 

With all the stories of this nature finding their way into media I wonder if there might be some value in pushing for a new timeline for ME.

Although it can't be good to suggest exercise regardless due to not knowing who might benefit and the harm that befalls those for whom it doesn't I think that if ME diagnosis was updated as only valid say after 5 years this kind of article could not suggest severe ME.

I know if you have ME then you have it right at the start of illness but there is little to be done other than treatment for relief of symptoms. Having this 5 year transitional period as only 'possible' ME only to be confirmed over time and 'possible' Post Viral Fatigue likely to resolve in the 5 year time frame could be helpful with regard to BPS propaganda.

Just an idle thought.

 

Another one from July, but currently also in the news, was interviewed on Lorraine Kelly show, and I think has recently been made into a film.
Channel swimmer Beth French on jellyfish, living with ME and her autistic son
https://www.bbc.co.uk/sport/swimming/49083125

eta: maybe she has Fibro, not ME?