New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020

Given the comments here I haven't had the nerve to read the whole thing yet.
This quote caught my eye though and I am not clear on what it means.
"….For children and adolescents who are sufficiently unwell to be continually away from school, on-going care should also involve a paediatrician. ..."
It sounds as though it's saying that if they cannot attend school, they are well. ?

 

Even when CFS services are led by immunologists, they still appear to deliver CBT/GET and little else.

The Dorset CFS service is led by a consultant rheumatologist - what does it offer:

https://www.dorsetccg.nhs.uk/Downlo...e/02_GMS_0011 ME formally Chronic Fatigue.pdf


f) Offer management options including, as appropriate:
 cognitive behavioural therapy
 graded exercise therapy
 activity management
 sleep management
 rest and relaxation
 diet

(...)

In addition to past published research studies the Dorset CFS/ME service has continued collaborating with Clare McDermott, Research Fellow in Primary Medical Care at University of Southampton with the aim of taking the Fatigue Management treatment approach forward and combining this with strategies and insights derived from the experiences of recovered and recovering patients; communication tools taken from Neuro-Linguistic Programming (NLP) to make therapy more accessible for patients, and to maximise cost effectiveness.

and has links with U of Bournemouth "Emotional Processing" research.

 

It's poorly written.

As I've posted earlier in the thread, NICE CG53 implies all children with suspected ME, CFS should be under the care of a paediatrician.

https://nice.org.uk/guidance/cg53/ifp/chapter/How-CFSME-is-diagnosed

"If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician (a specialist children's doctor) within 6 weeks of first seeing their doctor about the symptoms."​

 

Good grief!

i wonder what their definition of recovery is?

How do they distinguish between remission and recovery?

How do they know that remission/recovery wasn't just coincidental?

This strikes me as incredibly cruel. Anyone's pet theory foisted on the vulnerable, rubber stamped by authority. What happens when a patient is harmed?

i despair.

 

The photo is inappropriate. No photo at all would be better than one suggesting that we are all fine. Why do they have to have a daft photo anyway?! I thought that was what the 'real photo' campaign was all about?

I agree. I find it so offensive that unless they change that I wont be renewing my membership. I wont be renewing & I will end my financial support through easyfundraising, Christmas card purchase etc. What on earth was the author thinking?

ETA It's terribly disappointing because they do produce loads of good stuff, but that comment about there being gains is inexcusable. And if they say anything about 'looking at the positive side' I will throw up. I DO look for the positive, I have still 'gained' not one single thing, except a lot of knowledge about how utterly shite & unethical & cruel the medical profession can be - which I should never have needed to know.

​

 

When my son was still under a paediatrician there was no service provision in Dorset for children and young people - a children's service was rolled out later. (This was several years prior to the roll out of adult services across England and publication of NICE Guidelines.)

When he reached the age of 17 he was asked whether he wanted to be transferred to adult secondary care - he declined and elected to have no further hospital follow-up appointments.

So we've had no involvement with what was then known as "The Wareham Clinic" and no involvement with the Dorset CFS Service, led by Dr Selwyn Richards, based at Poole Hospital NHS Foundation Trust.

 

I think there are some very, very good points in this thread, which I hope the MEA address, but sometimes with a dose of hurtful feeling against the MEA that depends on there being MEA bad faith. I don't think that underlying tone is fair IMHO. I think demonising them doesn't engender anything positive.

The MEA's position is underwritten by good faith overoptimisim, because it assumes that many medics or fatigue services have their Purple Book or have equivalent knowledge. And it errs on the side of professional decorum, which is both tactically prudent and naïve at the same time - depends on the individual specifics of our shitty contexts. The cake can't eaten and had, so they should rebalance more towards breaking some eggs and making the omelette.

I see their reference to "unhelpful or hostile attitudes" as professional wording. While I may curse and swear about such medics privately, I would remain professional in professional output if I have to engage with some of them and need their buy-in.

Whatever we can say, my understanding is that the MEA were absolutely consistent throughout the decades in their position on GET and CBT, regardless of the pressures. However fallible any org is or feedback that is necessary, supporting PACE paradigms isn't a criticism we can make.

I say it all the time. My assumption is that many people of working age who are no longer engaged in onerous careers probably feel the same way. Put otherwise, at least I get to see my spouse's and children's faces more than I ever would. There are other pluses that I try to remind myself of, even just that I get to listen to podcasts. Sure, it's crappy, but at least...

I totally understand that this will not apply to everyone, but it is not irresponsible to encourage people to find whatever silver linings are available, if available. It is responsible IMHO.

The problem is the loaded word "gain". It would not be so loaded if relevant professionals and society were all properly informed. The word "gain" is very wrong because of our context.

Frankly, I despise what I hold A4ME did to me. I don't see the MEA or CS as doing anything other than remaining in the game. Unless you are literally going to stage an insurrection and sieze control or impose change physically, it remains absolutely critical to have a medic who remains unimpunable in medical and medical-media circles. The alternative is analagous to revolutionaries refusing to see any merit in electoral politics - fine if you do get the chance to storm the palace, but even the Bolsheviks couldn't pull that off and had to sieze power after others brought everything down.

However difficult it may be to get that balance correct all the time, a stressful strategy I'm sure, Charles Shepherd is maybe one of the most media covered medics on the planet on the topic of ME, a role that has been fundamental to my ability to survive Vs family and medics. His life's work has helped me and many others who will never have a voice.

I'm sure he'd never claim infallibility, but the assault he often gets can be brutally unfair and cruel. A person with ME who has dedicated himself to us. I also wouldn't expect him to engage everyone or every issue on Facebook. He probably does engage on FB more than any other ME 'thought leader' from what I've seen.

In that document, yes. Their other publications all make the Workwell case and they have always been against it, unless I've missed something.

Very agreed. It's too optimistic that their message and Purple Book are widely held. That would also assume that NICE guidelines are being ignored by NHS Fatigue Services, which by definition they can't be.

This, and worse. Much, much worse. Sadly.

It is a very, very bad choice of word, but I still hold on the idea above that it is positive to find silver linings in any situation.

This

It's my above point about overoptimisim again. The MEA have to consistently treat the world as they find it, not as if it is even partially how we'd want it.

Exactly. And yet there can can vitriol that I think is unfair.

Powerful points not made often enough.

They just can't operate any other way as they are NICE governed by definition. Witness Dr Bansal at St Heliers hospital being kept in a clinical cage and having to go private.

 

For what's its worth, I'm not even a member of the MEA, let alone any other reason to defend.

But I cannot think of any other doctor globally who had had as much television or respun online video footage as CS on the topic of ME.

Sure there are others in other online videos, but those are extremely niche and in our bubble. They are not mass media.

I really would think twice before disparaging the single medic who's mass media presence is redistributed globally, often under the BBC brand which is still unusually trusted globally.

 

I'm sorry, but with a 33 year old whose life has been totally fucked up since the age of 12, I find it impossible to see any silver lining for him or for us, as his parents/carers.

 

@InfiniteRubix thank you. You articulated what I couldn't find the words for.

 

With all the warmest sentiments and love in the world that I genuinely feel for you and your child's situation, I'm definitely not disputing what you wrote. Nor can I or should I tell you otherwise. Anyone's attempt to scrape some positive fact in their own situation doesn't give anything positive to anyone else. But what I can scrape out of my existence does keep me living, so I have to be positive about it while I still can.

A silver lining (or whatever other terrible phrase) will not always be available, which I hoped that I'd made clear. Apologies if it wasn't enough.

 

And why publish the document and then ask for feedback? A draft could have gone out for consultation in ME Essential.

 

And I wouldn't worry about upsetting CS. I've known him since 2003 - I can assure you he has a thick skin.

Katie, who manages the MEA's Twitter has confirmed that she is forwarding my concerns to Russell.

 

InfiniteRubix said: ↑

Back in 2003, Charles Shepherd did not hesitate to whistle-blow on the MEA's senior management and Board of Trustees (which resulted in them sacking him from his paid position of Medical Adviser) - which was covered in the media, including the BMJ and Third Sector magazine.

I don't see anyone here being "brutally unfair or cruel" - but exasperated people raising points of concern as he had raised his concerns, very publicly, back in 2003.

The MEA has a membership; the MEA exists solely to represent the best interests of its membership. It can put out drafts for consultation - it could have put this out for consultation.

 

I made a convenient list of all the gains I have made from this disease, in case this could be a useful reference:

That's all I have. Stay tuned, it's only been 11 years so any day now those additional gains should starting pouring in.

 

Presumably only if all of your family are also ill and you are all stuck in the same bedroom on benefits?

 

I did manage to scrape together two, for Twitter:

• We struggle to identify a single "gain" except one - he has not required a new pair of shoes since he was 13.

• Oh yes, one more - no university fees had to be found.

 

I absolutely and completely respect your right to find whatever silver linings you may. I am firm believer that if you can't change things you may as well make the best of them and have the utmost respect for those who can.

Nobody, has the right to tell anyone else to do so. For a charity, where a patient group who are thoroughly discriminated against by the establishment, it is simply not acceptable.

Off the top of my head I can think of 4 -5 young adults who should have been out living it up. Instead their families had to bury them. I wonder what they would make of the comments about gains. I'm not going to mention the individual 's by name as I don't want to drag their families into this. I doubt I need to anyway.

I am a member of the MEA and have been for a long time. I don't always agree with Charles Shepherd, but I have a great deal of respect for the work he has done. Especially when he seemed to be the lone voice of reason. I don't see this criticism on this thread as being personal to him or anyone else. Regardless of previous work by the charity we deserve better from them than this.

Edit - clarity

 

It's also the absolute irony that often PWME are at risk of being stolen away from their families and prohibited from seeing them at all that makes this statement so awfully misguided.