United Kingdom: ME Association news

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The British ME Association are requesting people to send them accounts of their experiences of health and social care as part of a planned campaign looking at good practice and the new NICE guidelines to roll out in ME Awareness Week in May and beyond. See https://meassociation.org.uk/2021/0...IDkZ1oN0lLJeg39TvhwTDjTEROxTIvu7tPVb8WIc5Y3QI

 

For anyone doing this and submitting a story - are you thinking of sending in photos of you before you got ill, or photo after you got ME? I’m not sure what the ME association usually want / use.

edit actually for this it makes sense to use a photo after getting ME I think.

 

I think the deafening silence here may be linked to the fact that few of us have actually had any of these interactions in the last two years.

I can't even remember the last time I discussed an individual ME symptom with my GP, let alone the illness as a whole.

 

Yes, while I applaud their efforts they seem to be in danger of missing a crucial point -

Because we have been so badly treated, our disease so poorly understood, the previous NICE guidelines were so bad most of us stay away from our GPs in droves.

I know when I go I don't actually mention ME at all unless I have to. They won't or can't help & I don't need the hassle.

So, in not establishing just how many people don't even ask for help, there is a very high risk of underestimating just how poorly served ME patients are and what their needs might be.

 

It's an important point. I'm thinking about emailing them to say so – since it's not a survey with fixed questions, it's easy enough to respond by explaining why you avoid actually asking for help.

 

PS: I've just realised that the final paragraph about the survey says this:

• You might also like to explain why you have not engaged with the NHS or applied for social care during this time (we know that some of you choose not to do so because of the lack of understanding about ME/CFS and earlier bad experiences).

Perhaps we should, if we're up to it!

 

Well spotted @Kitty.

It's a shame they stuck that at the bottom as there's a fair chance that those of us who just don't have the resources to go reading stuff that isn't relevant to us won't get that far.

Once again, probably the more severely affected & most in need of support.

 

The MEA will be holding their 2021 AGM on the 16th March, 11am to 12pm, virtually.

Members who receive the ME Essential can find how to register to attend at the top of page 8, with more detail on page 13.

ETA: Your registration needs to be received, via email, by 28th Feb, so not much time left.

 

Sigh.

MEA shared this graphic on their Facebook page:



...and encouraged people to download it to use it to "raise awareness". They did mention in their post that this is just a theory, but they said that nowhere on the graphic. So now lots of non-scientifically-literate people will be waving this around and insisting that it's scientific fact, and this'll just be taken as more evidence that hysterical PWME are obsessed with non-scientific biomedical explanations for the illness.

Here's the post on Facebook:



I did comment to give feedback on this, but got a response from CS saying "fair point, but it's just a hypothesis and it's open to discussion", which is really missing my point entirely. Sigh.

 

It's wrong, at least in my case - Cognitive dysfunction isn't just as they suggest, memory and concentration issues - that would suggest that if I tried really, really hard then things could be overcome. This is not the case, entire sections of my cognitive abilities reduce or disappear, mostly without my awareness (it only becomes an issue in rare cases where I am with it enough to realise this. Most of the time it's 'invisible to me. Sort of like losing the ability to see red - unless there is a clear urgent need to act as if I've seen red then, even on playback, I will have no idea that red has disappeared, even when it comes back, unless it's pointed out to me, and I believe whoever does - and even then, what do I do?)

Trival with something like seeing red, but when it's the ability to see certain types of movement, or process some types of noise, and I'm standing in a road - it becomes...more of an issue.

Neither of these is concentration or memory, but they are cognitive dysfunction.

I haven't really looked at the rest of it

 

If it had been clearly labelled: "One hypothesis", I wouldn't have a problem with it. At least it's something other than "It's a psychiatric problem". Saying that the graphic explains ME is simply wrong.

 

I can see your point about the importance of emphasising this is based on a hypothesis but I actually do find it quite helpful as a graphic.

 

Well it's not even a hypothesis, it's mostly just a list of symptoms and listing of organs affected.

 

I think it's the 'immune system response does not settle down - cytokines' bit that's a hypothesis?

 

Ignoring the theory element of the graphic, do people see it as a useful way of classifying symptoms?

I have for sometime been trying to work out how to produce an exhaustive check list of possible ME symptoms, that in the first instance could serve as a self monitoring tool to record variation over time, to get people to consider important aspects that often get overlooked, such as orthostatic intolerance, but the big problem I have found is organising the potentially 100 plus items in any rational order.

For example for me migraines occur as an aspect of PEM, as a consequence of sensory overload, eg too much bright light, or as a consequence of specific food intolerances, so are they neurological or related to the digestive system or an autoimmune response or some thing else? Would increased fatiguability, PEM, disrupted sleep patterns, increased sleepiness, etc, naturally fit in a single grouping or different groupings?

Some symptoms are also grouped by short hand, such as IBS, which covers a broad range of specific symptoms that may or may not be directly connected with each other?

 

[my bold]

Surely "explains the pathology" is stretching a point, seeing as no one yet properly understands the pathology of ME/CFS. That headline comment makes no mention of hypotheses, quite the opposite.

 

I fully appreciate that Charles Shepherd will have done this with the very best of intentions for people with ME/CFS, and will have put his all into it. But maybe needs some clarification of what it is and what it is not.

 

I suppose the word "might" implies that it's a hypothesis, but that's far from being clear.