United Kingdom: ME Association news

I'm currently in the process of liaising for corrections to statements published on the MEA's page about classification and coding, specifically around SNOMED CT and the coding of "Postviral fatigue syndrome".

 

Crumbs. I don't often read their documents but the quotes above are disturbing.

 

Complete cobblers, then. Nobody has the faintest idea, and shouldn't be pretending they do.

 

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.

 

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:

 

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.

 

It's not just that there are no services - it's that the services may be positively harmful.

 

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.

 

I average once a decade seeing an ‘ME/CFS consultant’ (infectious disease specialist) then all they did was confirm the diagnosis.

 

I've never seen one in 48 years!

 

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.

 

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

 

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.

 

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

 

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.

.

 

Yup. They could just have gone for a robin like everybody else, because it's impossible to represent a whole community with an image of one person.

Anyway, being well enough to sit up and look out of the window for a robin would be a real Christmas treat for some people with ME/CFS.

 

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.