United Kingdom: ME Association news

Nightsong said:
It is sometimes said on S4ME that the materials put out by MEA are good, or at least reliable. While more reliable than others I've been having a brief skim through, and there is still quite a bit of dubious material. A few random examples: a number of documents reference emotional stress as a a highly relevant factor, for example, in this document:

If you're wondering what the "three stages" are, they are apparently predisposing, precipitating, and perpetuating - which sounds familiar, those stages being also a critical component of the biopsychosocial model. In a document about immunisations the MEA say:

I'm sure most S4MEers will immediately recognise the first and last statements as being unevidenced, and the sentence about a "Th2 dominant" response references a concept in immunology that also has very little basis to it and is derived from an old and oversimplified model.

There are also references in a number of documents to "atypical" or "non-epileptic" seizures being part of severe ME/CFS (link, link, link, amongst others). I really do not think we should be conflating ME/CFS and FND in this way.

And there is this document about the potential causes of ME/CFS that is somewhat muddled.

I don't have the energy to take a more thorough look but someone might like to.
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Crumbs. I don't often read their documents but the quotes above are disturbing.
 
Nightsong said:
It is sometimes said on S4ME that the materials put out by MEA are good, or at least reliable. While more reliable than others I've been having a brief skim through, and there is still quite a bit of dubious material. A few random examples: a number of documents reference emotional stress as a a highly relevant factor, for example, in this document:

If you're wondering what the "three stages" are, they are apparently predisposing, precipitating, and perpetuating - which sounds familiar, those stages being also a critical component of the biopsychosocial model. In a document about immunisations the MEA say:

I'm sure most S4MEers will immediately recognise the first and last statements as being unevidenced, and the sentence about a "Th2 dominant" response references a concept in immunology that also has very little basis to it and is derived from an old and oversimplified model.

There are also references in a number of documents to "atypical" or "non-epileptic" seizures being part of severe ME/CFS (link, link, link, amongst others). I really do not think we should be conflating ME/CFS and FND in this way.

And there is this document about the potential causes of ME/CFS that is somewhat muddled.

I don't have the energy to take a more thorough look but someone might like to.
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Ok at the end of this piece about stress it suggests taking up yoga, if you’re able. Do I win a prize for finding it?

That Stress article is the worst because it’s ostensibly about stress, it’s like a Trojan horse to slip in some unconfirmed “doctors agree” and “anecdotally” flannel.

I have to say there’s a letter they produced as a template to give to your GP (and my apologies if the author is among us) but the length of it, any GP would file it in the bin. I couldn’t be doing with reading it - and I need such a letter to get my GP to pay attention to me.
 
Couldn't see this posted elsewhere - Primary Care Infographic

https://meassociation.org.uk/literature/items/primary-care-infographic-for-healthcare-professionals/

A comprehensive infographic with expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association) to help primary healthcare professionals with diagnosing ME/CFS.

It contains vital information regarding suspecting ME/CFS, diagnosis, differential diagnoses, key symptoms, investigations, and information relating to NHS specialist referrals.
 
https://meassociation.org.uk/literature/items/primary-care-infographic-for-healthcare-professionals/
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I wish CS would be a bit more cautious in what he's claiming. No evidence for fasciculations or myoclonus being part of the presentation of ME/CFS. No evidence for endometriosis or interstitial cystitis being "co-morbid" conditions. Claims made about dysautonomia, POTS, MCAS, hypermobility, and the NASA lean test without qualification. And the usual tripe about a "complex multisystem disease that involves the brain, muscle and immune system".

It also states that "the NICE guideline on ME/CFS recommends that GPs should refer people with ME/CFS to a specialist ME/CFS service" and that "the MEA website has a directory of all the UK ME/CFS referral services" with no cautionary note about what these services actually have to offer; in many cases pwME would be better managed by their GP alone.

On a tangential point, do we actually have hard evidence for the 25% severe figure? Very commonly cited - it's in the old CMO report, but surprisingly I can't find a reliable source for this - one cited source in one paper was a 2001 AfME survey that actually states:
  1. 2,076 (89%) of the respondents (28% of those mailed) replied that they are or have been severely affected (i.e. either bed-ridden or house-bound).

  2. Of the 2,338 respondents, 710 (30.4%) are currently severely affected.
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Nightsong said:
It also states that "the NICE guideline on ME/CFS recommends that GPs should refer people with ME/CFS to a specialist ME/CFS service" and that "the MEA website has a directory of all the UK ME/CFS referral services" with no cautionary note about what these services actually have to offer; in many cases pwME would be better managed by their GP alone.
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This is a big problem. Charles put a huge amount of effort into making the new NICE Guideline a reality. Now it seems that the MEA is happy to accept a situation in which the Guideline is becoming increasingly meaningless. There are no services worthy of the name as far as I can see.
 
Sasha said:
It's not just that there are no services - it's that the services may be positively harmful.
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And that the services which do exist are at best a short-term intervention.Once you’ve done their pacing course you’re discharged back to be the GP’s problem.

I remember explaining this to someone with MS who was shocked I didn’t go to see a consultant every year for a check-up. Well, not just me but everyone with ME doesn’t see a specialist once a year. I think they thought I was making it up.
 
MrMagoo said:
And that the services which do exist are at best a short-term intervention.Once you’ve done their pacing course you’re discharged back to be the GP’s problem.

I remember explaining this to someone with MS who was shocked I didn’t go to see a consultant every year for a check-up. Well, not just me but everyone with ME doesn’t see a specialist once a year. I think they thought I was making it up.
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I average once a decade seeing an ‘ME/CFS consultant’ (infectious disease specialist) then all they did was confirm the diagnosis.
 
Yes, it’s a small point but an important one. Especially now there is some public awareness of ME and lack of services. The public would assume that if a service exists, it’s like other diseases like MS, Cancer etc that you’re under the care of a hospital.
They absolutely do not think that these services are an MDT made up of physios and psychologists and OTs who run one course for newbies which lasts a few months and that’s your lot.
 
MrMagoo said:
Yes, it’s a small point but an important one. Especially now there is some public awareness of ME and lack of services. The public would assume that if a service exists, it’s like other diseases like MS, Cancer etc that you’re under the care of a hospital.
They absolutely do not think that these services are an MDT made up of physios and psychologists and OTs who run one course for newbies which lasts a few months and that’s your lot.
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And how made up what is thrown at people is but then becomes so defended and believed in by said staff… ie how there has literally never been anyone caring or interested in finding about the illness one iota at most of them nevermind real clinical learning

it’s just sending people along to get told off by a lecture on trying to do nonsense stuff what your body should be able to do but can’t

it’s dangerous and more than taking the mickey out of patients in a callous way
 
bobbler said:
it’s dangerous and more than taking the mickey out of patients in a callous way
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Yep. At least if they were openly mocking and dismissing us, and not even pretending, it would be clear to all. But the pretence of caring and having something useful to offer is vastly more difficult to expose and counteract. Which is why they keep doing it, instead of simply admitting they got nothing.
 
Sean said:
Yep. At least if they were openly mocking and dismissing us, and not even pretending, it would be clear to all. But the pretence of caring and having something useful to offer is vastly more difficult to expose and counteract. Which is why they keep doing it, instead of simply admitting they got nothing.
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I was just reading about NICE refusing to recommend a drug as it wasn’t good value for money for the taxpayer.

How the heck are the current ME NHS services value for money for the taxpayer? I’m sure PROMS will tell us.
 
Dx Revision Watch said:
Ah, hand stuck to glam looking lady's head...

Click here to view additional text inside the card:

https://www.flipsnack.com/russellfleming/me-association-xmas-card-2024/full-view.html


https://twitter.com/user/status/1867597302288068655
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Oh for goodness sake! Could the MEA have not avoided the 'Woman with hand to head' sodding stereotype photo that we have all been complaining about for years!! I spent 2 Christmases alone and just trying to stay above the pain and too sick to chew. Many Christmases alone. As for lovely wrapped pressies.....

95% of the time I could not have a photo of me taken -

1/ because of extreme complicated cognitive stuff that makes it so hard to use a mobile, and when I can take photos I cant forward them.

2/ Because I look like a wreck, too sick to shower, not able to find clean clothes, wash hair etc etc.

'Sad but pretty' Christmas ME photos just make me feel alienated.

.
 
MrMagoo said:
I was just reading about NICE refusing to recommend a drug as it wasn’t good value for money for the taxpayer.

How the heck are the current ME NHS services value for money for the taxpayer? I’m sure PROMS will tell us.
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Well, all cost-effectiveness analyses of this treatment model have all found that it's not cost-effective. Which is a bit silly since it's not even effective so it's like trying to count how many zeros you have.

So really the only conclusion from this is that all those rules are made-up and arbitrarily enforced. Sometimes they're bound by the guidelines because the guideline says no, so they can't do anything. Other times the guideline is just a suggestion so they aren't bound by it. Every time, every single time, it's stacked against us. Which says everything about how this is deliberate and intentional.

But pointing out that such a vital system is dysfunctional and doesn't even respect its own rules is basically like saying that the Sun will not rise tomorrow, it's simply considered an absurd statement and any positive evidence is simply dismissed. Because the system is entirely arbitrary when it matters, while the "rules" are sacrosanct when they don't.
 
Trish said:
I find it very odd to see a Seasons greetings card filled with photos of trustees and senior staff. Very pseudo corporate or something.
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I find it very odd to see a card representing a woman of colour. That’s the first reference to people of colour I’ve ever seen from the MEA (I do look).

That’s an awful lot of hair to look after.

Also, “seasons greetings, don’t forget you’ll be feeling rubbish” just do a non-denominational winter scene.
 
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