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

Esther12 said:
I meant that it was worse. There's more good reason to inform patients of junk-science, and patients are more likely to be aware of problems and read such things sceptically. I think a puff piece about Colin Barton is of less interest and more likely to be misleading. Sorry - I now realise my first post wasn't clear.
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Ah, OK, thanks for the clarification :)
 
Esther12 said:
I think a puff piece about Colin Barton is of less interest and more likely to be misleading.
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I think to many patients, the less politically aware and newly ill, the Colin Barton piece will be of far more interest.

Unfortunately, many patients won't bother with the science papers. Until they learn better, they will believe in the system. So this is exactly the type of thing that will catch their eye.
 
Invisible Woman said:
I think to many patients, the less politically aware and newly ill, the Colin Barton piece will be of far more interest.

Unfortunately, many patients won't bother with the science papers. Until they learn better, they will believe in the system. So this is exactly the type of thing that will catch their eye.
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I probably should have said 'of less value' rather than 'less interest'.

I'm going to stop posting now, before this thread becomes just me having to correct my own posts!
 
If they felt they had to post it then they could have at least added a link to their review of SMILE, and maybe pointed out that Esther Crawley is one of the Sussex MEAs medical advisors......

https://www.meassociation.org.uk/wp-content/uploads/MEA-Review-The-SMILE-Trial-12.10.17.pdf


eta: in fact any reference to Colin Barton or the Sussex MEA should have their allegiance to Esther Crawley, and therefore all that she stands for ( including being a staunch PACE supporter), clearly highlighted.
 
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MEA seemingly holds position that everything needs to be posted, they can’t or shouldn’t or won’t put things up with caveats and we just have to wait until often much later dr shepherd puts up a comment. I find this bizarre. I actually think in this case it’s about being quite pro the yoga is good message because MEA aren’t anti activity and have a,ways been more interested in the ambulant, not wanting to say negative anything about CB does, why, and therefore thinking they have to give a detailed nuanced explanation of their view when it’s ready.
This happens repeatedly and dr shepherd always quotes how busy he is. I don’t see the relevance when the posting is done by Russell in what I think is a paid position. We don’t even need an individual, educated, detailed, judgement, just two lines pasted stating at the minimum that MEA doesn’t necessarily endorse what’s written in what it shares and its shared as interest only and perhaps in this case a warning on LP. I fail to understand why that’s not logical or possible and we have these massive threads of criticism and they don’t budge.

Edit he actually says Russell was right to post it immediately as it was up elsewhere. Why was this local news of any urgency when it really needed accompanying comment.
 
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Sigh...

I am so disappointed in the MEA. First for posting this article at all, and second for Dr Shepherd's response.

We have just gone over the whole process of trying to get AfME to understand that they need to tighten their advice on treatment and remove the bits about 'some patients find... ' helpful. (including alternative therapies), and now we get this crap from the MEA.

Patients organisations should be rigorous and not recommend or even seem to recommend treatments that are un-evidenced and that lots of patients find do them harm.

And now we have Dr Shepherd saying this:
4 For people with mild or moderate ME/CFS, who are able to increase their activity levels a variety of approaches can be helpful, including the possible use of yoga. On a personal basis I find swimming in a warm pool and walking to be perfectly appropriate for my level of disability - provided this is done on a flexible basis

5 Where activity levels can be safely and flexibly increased, anecdotal evidenve indicates that gentle yoga, where this is involves tuition from a yoga teacher who understnds ME/CFS, can be helpful for some people with ME/CFS

6 For people with mild or moderate ME/CFS, a significant proportion will make some degree of improvement over the course of time. Complete and persisting recovery from ME/CFS does sometimes occur and is more likely to occur in children and young people. But there is no evidence that any specific form of management - orthodox or alternative - will lead to complete recovery. And that includes yoga
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Where is the evidence from clinical trials that swimming, yoga, LP, any activity based treatment is 'helpful'. Why does Dr Shepherd, who has fought against recommendations based on anecdote suddenly use an anecdote about what he can do as evidence to justify publishing this article?
 
Kalliope said:
We believe that people with ME/CFS have a right to see what is being written about them, or this disease, even if we do not agree with the content

I aim to provide comment, where necessary, as soon as I am able to do so
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Then just maybe messages should not be posted until such comment can be made. And commenting is only useful if it is not waffle with endless caveats etc.

Although, I'd prefer the MEA not see themselves as a conduit for all the crap press. We are quite capable of finding it and commenting on our own. And there are plenty of the newly diagnosed who might go to a site like MEA and have no prior knowledge or understanding to bring to the reading of such news.

I get quite infuriated quickly with this sort of thing.

ETA for clarity: the quote above is Kalliiope quoting Charles Shepherd.
 
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Trish said:
Where is the evidence from clinical trials that swimming, yoga, LP, any activity based treatment is 'helpful'.
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Exactly. I've not tried LP and certainly don't plan to, but the swimming, yoga, walking..... Frankly, that is what caused me to slide from being moderately ill to severely ill with some nasty, scary times along the way.

Also, I think these categories can be a problem. CS may talk about mild, moderate and severe and I, as an experienced patient, know that somewhere the MEA defines what is meant by that. However, other doctors may use different definitions of each level. Let's face it, if over 40% of patients seen at clinics are misdiagnosed, what are the chances of those with the correct diagnosis even being correctly categorized.

So, a patient could easily be harmed because someone told them they were mildly affected and suddenly they're trying to swim and don't realize that their doctor may grade them differently.

edited - clarity
 
Invisible Woman said:
Exactly. I've not tried LP and certainly don't plan to, but the swimming, yoga, walking..... Frankly, that is what caused me to slide from being moderately ill to severely ill with some nasty, scary times along the way.

Also, I think these categories can be a problem. CS may talk about mild, moderate and severe and I, as an experienced patient, know that somewhere the MEA defines what is meant by that. However, other doctors may use different definitions of each level. Let's face it, if over 40% of patients seen at clinics are misdiagnosed, what are the chances of those with the correct diagnosis even being correctly categorized.

So, a patient could easily be harmed because someone told them they were mildly affected and suddenly they're trying to swim and don't realize that their doctor may grade them differently.

edited - clarity
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I couldn’t agree with this more. In fact I believe that the MEA’s scale for how they define mild is not conducive for good management.

I had GET and was told I was mild. Then the MEA scale said I can work therefore I’m mild. They also,encourage “light exercise”.

What they should say is that if you work ..forget walking, or swimming, you will be couch bound the rest of the time just so you can manage going to work.

I think this talk of exercise for the mild is unhelpful and misguided. Now I’m 5 years in, I know that what I should have done is not try and do walking etc. I wish the MEA would change their scale and advice for the newly diagnosed.

There is a lot of unsubstantiated commentary about the “mild” group which I think is pure conjecture.
 
As far as I'm aware, the social media person is home-based. That means there will be delays in 'official' responses to these things. That said, they should hire someone they trust to write statements on their behalf accurately. I do the social media for a publishing company, and I always preface contentious stuff first.

That said again, sometimes things get shared without anyone reading them. Occasionally that's a result of someone being rushed out the door or trying to get things done while ill. The social media person should be honest and say so, though. I would also expect the social media person to know which sources are reliable and which are not. The Sussex group always cause problems, so it's a very, very stupid mistake to make.

If I worked for Greenpeace, I would think twice before sharing anything by Shell, for example. This is commonsense.
 
@Andy, I can see your comment on FB, and I'm not one of your FB friends. There are currently 43 FB comments, many of them have large amounts of comments too! FB is very hokey about what it lets you see unless you manage to force it to show all comments - even then it often doesn't comply! Where's 6 of 9 :borg: when you need her? ;)
 
Andy said:
There seems to be evidence that the MEA have 'hidden' my comment on Facebook

Which means only me and my Facebook friends can see it, nobody else.
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I can clearly see your post @Andy & we're not fb friends. BUT i had to change the fb settings from 'most relevant' - where fb chooses which comments to display, to 'new comments' - where all comments are displayed in chronological order.

I'm in favour of them posting everything. But I find it incomprehensible why the MEA fb person cannot simply put the phrase "this is not necessarily an endorsement by the MEA" at the top of every share/post that isn't perfectly in line with the MEA position. There's no need for a long comment by CS if he doesnt have time. When Tony Britton was running it (the fb page), after a while of arguments like the one on there today, he started putting that caveat (or similar)... for a while anyway. I don't know why there is such a blind spot around this issue..
I mean even the phrase 'not a recommendation', like we do here, would suffice. But perhaps they are trying to keep everybody (inc Colin Barton) happy. Which would be disappointing to say the least.
 
I see no reliable evidence that swimming or yoga help even mild ME. I think GPs struggle to wrap their heads around the fact that supposed 'commonsense' approaches to medicine don't appear to work for ME. It's too ingrained in people that exercise is always good.
 
Also - I think that this needs to be seen in the context of a number of pieces in the MEA magazine promoting Barton and his group recently. WTF is going on? Are there people at MEA who think that Barton is helping patients? I hear nothing but bad things about the influence he has had from patients who live in his area.
 
I know I've said it before, but the whole issue about the 'grading' into mild, moderate, and severe needs to be looked at seriously.
Simply going on some short arbitrary list of what a patient might currently be able to do/not do is hardly scientific and does not seem to take into consideration that a persons condition can get worse.

The fact that a 'new' definition of 'very severe' is increasingly being used shows that none of the 'scales' adequately address the reality of living with ME.
 
I agree these rating scales are problematic. The MEA scale says it may be helpful for disability benefit/insurance claims and for talking to doctors, which may be true. But a patient organisation talking to patients, some of them newly diagnosed, that claims that yoga, swimming and walking, for example, may be helpful for people with mild to moderate ME is very misleading.

The MEA Disability Rating Scale, 2016
 
adambeyoncelowe said:
As far as I'm aware, the social media person is home-based. That means there will be delays in 'official' responses to these things. That said, they should hire someone they trust to write statements on their behalf accurately. I do the social media for a publishing company, and I always preface contentious stuff first.

That said again, sometimes things get shared without anyone reading them. Occasionally that's a result of someone being rushed out the door or trying to get things done while ill. The social media person should be honest and say so, though. I would also expect the social media person to know which sources are reliable and which are not. The Sussex group always cause problems, so it's a very, very stupid mistake to make.

If I worked for Greenpeace, I would think twice before sharing anything by Shell, for example. This is commonsense.
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This is a repeated occurrence though , it literally happened a month or two in exact way and their position never changes that’s why people are annoyed. There’s clearly some resistance to taking that sort of stand on CB or his group that many of us take too. CB was after all selected as suitable to be be a PAG on MEGA. I don’t think posting something by them was a ”mistake”.
Charles Shepherd now wants the conversation to switch to a discussion on yoga for ME which perhaps was the original intention as the yoga was the bit of the article copied.
 
On the issue of grading, mild, moderate, etc, what is ultimately relevant is not what in theory a person with that 'grading' can do, but rather what are they actually doing.

Even if we had a reliable and agreed grading, it may be that someone with mild disability, who is working part time, has no children, no responsibilities outside work and lots of support in the home could include a form of gentle exercise such as swimming in their overall routine, however it is possible that another person with an identical underlying disability is a single parent working full time for whom the introduction of an additional activity of gentle exercise is the straw that breaks the camel's back, triggers severe PEM and pushes them into a dangerous downward spiral.

This is why unguarded statements about the value of gentle exercise, be it swimming or yoga, even if anecdotally some people with 'mild' ME find it fits well into their routine and believe it to be beneficial, are very dangerous. The overriding constraint is not what an individual's level of disability is, but what fits in their overall energy envelope at that time.

I do not say people with ME should never undertake gentle exercise, I suspect all of us are constantly seeking to maximise what we can do, I do not say people with ME should not seek to be as fit as possible within the constraints of their ME, undoubtedly in general our bodies evolved to be active, but I do say anyone advising people with ME should be very very careful in offering blanket advice.

First and foremost people need to learn to read their own bodies and understand their own energy envelopes, to know how to pace. It could be for some that the right form of exercise, such as gentle yoga might help them learn to read their own body, but this would require informed and insightful guidance. A populist article or even a GP recommending swimming or yoga without the context of an understanding of managing ME overall is likely to do harm.

I am only beginning to understand these issues adequately some twenty five years into my condition. It may be that I am more stupid or slower on the uptake than most, but I suspect the right information and support twenty five years ago would have helped reduce the various 'downs' I have regularly experienced.

It is hard enough for people to get their heads around the paradoxical aspects of ME without the unguarded promotion of potentially harmful activities presented without a clear warning context.
 
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