ME Association magazine summer 2019

Someone has just shared with me this quotation from the summer edition of the ME Association magazine:

(This quotation may not be precisely accurate, I do not have the magazine myself, just copying the quotation which another PWME sent me, can't guarantee that she copied it completely accurately.)

This was written by Neil Riley, MEA Chairman, ME Essentials magazine, summer 2019, issue 150, page 23.

In my opinion this is awful. Really insulting to severe patients. And dangerous advice! Unacceptable for this to be published by the MEA.

What can we do about this? Make a complaint to the MEA? But will they listen? They don't have a good track record of listening to severe patients.

 

I don't see many people talking about 'aggressive rest therapy' as a treatment, but it always made me uncomfortable when I did see it. When there's so much variety amongst the people being diagnosed with ME/CFS it's very difficult to presents one's personal experiences in a way that could be seen as a guide to how others should behave.

 

Is he suggesting that CHOOSING bedrset to cure won't work, as opposed to HAVING to have periods of bedrset?

 

Full article.

 

Yeah but saying no matter how ill you feel you should always get out of bed, is super dangerous. OK he didn't exactly say that outright, but it is strongly implied.

This is just another example of why severe patients feel that the MEA is really "the mild and moderate ME Association". Yes they occasionally do a focus on severe ME thing like last week, but the rest of the time, most of their stuff appears to forget about severe and especially very severe patients. Or the severes seem to be an afterthought. And when severe patients raise concerns in comments on their facebook posts, it never seems to be taken on board.

 

Thanks Andy for posting the full article.
We don't often hear from the MEA other than through Charles Shepherd.

I think there are a number of contradictions in the article;

"I suggest you get a grip of yourself, leave your sick bed and go for a walk. So I did. Within two hundred yards I collapsed and spent the next seven years in bed."

"Rise from your bed and walk would be my advice once the initial illness has passed".

"GPs, once the initial viral flare-up has passed, leave you to cope on your own"

"No matter how ill I feel I always get out of bed"

What is this 'initial illness/initial viral flare-up' that he's talking about?

 

It isn't necessarily a contradiction if there is a distinction between "go for a walk" and "walk", as there probably is.

 

I complained on their Facebook about this and had a very unsatisfactory mini discussion with Neil Riley. The end paragraph is Also horrible. His defence was he was only speaking from personal experience but he was giving advice in a national magazine, and that wording can potentially cause problems for people like me confined to bed with absolutely no choice. I’m not a member btw for precisely these type issues from mea. He ended saying he was worried that if people didn’t ever try they would never improve. I think that if others complained they might take more notice, their very severe ME representation has been long-term questionable, although they have shared a lot of good material this week , maybe NR needs to read it.

 

I thought the same thing when I saw it in the magazine. There have been a few things in recent issues which I thought were very negligent and if I were a new patient looking for advice some of the things being said are very dangerous. Will try and dig out the other ones that were concerning.

 

Which facebook post was this discussion on? I can't find it

 

He presents bedrest as something we choose,( hoping it will cure us). Bedrest is not an option it is the ONLY option for so many of us. In the final small paragraph: it is rather patronising to suggest that people can choose to live well with ME or live poorly. No one chooses how ill they are, or their personal circumstances ( eg finances, whether you have a supportive family and GP) . Compassion is really important- we need to be supportive of each other.

In this day and age no one should feel bad if they're not coping: particularly as so many of us are also living with mental health problems.

 

I find this article very problematic and worrying for the reasons people have mentioned. I don’t get their magazine and am not a member so I haven’t seen their other articles.

this message of “it’s better to try and fail than not try” etc. It’s very patronising tbh. Tbh I don’t know anyone with M.E who is not trying, infact most people push themselves a lot.

And the whole always getting up and washing and dressing thing.. *sigh*

This is not just a random person this is the MEA chairman with an article in the magazine. Glad you complained @Cinders66

Edit i just read the ending and didn’t like that either :/

 

I really, really dislike this article. It's definitely not the only one I've read in the MEA's magazine that keeps me from being a member (I was a member for 12 months some time ago and decided not to renew).

I don't see why the MEA cannot have a set of guidelines which all their published articles have to adhere too. They are not obligated to publish opinions, personal advice or individual accounts of persons living with M.E. Rather, their purpose is surely to support all their members.

Part of this duty of care means ensuring that none of their published words, statements or articles has the potential to cause either direct or indirect harm to any individual with M.E. (or their families), at least as far as is reasonably possible. Potential articles should be carefully checked for this by a suitably experienced editorial team.

I don't think the ultimate responsibility for this even lies with individual authors as everyone has some 'blindsight', however well meaning. This is the difference between an article in a formal publication such as the MEA's magazine and an individual blog.

Edit: Just to clarify, I don't mean to imply the MEA shouldn't publish personal stories, just that when they do these articles should meet strict guidelines (similar to the guidelines we have on S4ME) and be edited to ensure the charity is meeting their 'duty of care' to all its members.

 

Personally I think this getting washed business is highly over-rated.
Managing to feed myself has always seemed a higher priority (there is no-one else here to do it for me) and I'm 'only moderate'.

 

It's fine for him to share his experience of having ME. But the article reads as prescriptive for others and that's a problem. And it is patronising. It doesn't take into account a very large difference in the circumstances and often differing priorities of other people. Just do what I do and all will be well.

There is already way too much of this kind of telling us how to live from know nothing 'experts'. Why reinforce this message. I agree with others that people don't hide under the covers waiting for the magic moment when they feel well. He seems clueless and just repeating myself here--patronising. And we should expect better from a charity whose purpose is to consider the bigger picture.