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

Most people with ME/CFS can, and should, be managed by their general practitioner and members of a primary care health team. However, a significant proportion of GPs still lack the confidence and expertise to deal with this condition. Sadly, a small number still hold unhelpful or hostile attitudes towards people with ME/CFS.

Decisions about any aspect of management should be properly discussed with the health professional involved and mutually agreed – following the principles of informed consent that are produced by the General Medical Council and those set out in the NICE guideline.

If there is a query over diagnosis, or help is required in relation to any aspect of management, or you have a GP who just isn’t interested in ME/CFS, you can ask for a referral to a hospital-based specialist or ME/CFS service.
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Okay, this is problematic.

Only a "small number" of GPs still have unhelpful attitudes towards ME? Oh please. The vast majority of them promote GET/CBT.

Why are the MEA encouraging us to seek management in line with the current NICE guidelines?

Why are the MEA encouraging us to seek referral to ME/CFS services which will try to get us to do GET and CBT?
 
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ME/CFS brings with it a lot of “losses” but it may also produce some “gains” – such as being able to spend more time with family.
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Erm. No. I have never heard a single person with ME/CFS say that it enabled them to spend more time with their family. If you're sick enough to be unable to work, then you're generally also sick enough to be limited in how much time you can spend with your family.
 
Wow. What do we do when even our main charities come out with things like this? It’s so disheartening.

And encouraging people to go to their local hospital ME service - so they can be *harmed* and made possibly (and permanently) disabled for the rest of their life? In a few decades when all of this comes out, that so many people including our charities were complicit in this; people really will look back on it and think, why did no one have the guts to actually protect patients?
 
Exactly. And when we try to explain our concerns to MEA, all they do is whine that we're criticising them, and bang on about how busy they are. I even saw CS tell one very severely ill PWME that she should set up her own charity if she didn't like what the MEA were doing!

Which is totally missing the point. The MEA are trying to advocate on behalf of all PWME in the UK. Therefore, how they do this is a concern for all of us. We can't just agree to disagree, because they are in a position of dialogue on our behalf with those in power.
 
To be fair, most of it is fine. There is useful stuff for people in the UK about benefits and other sources of help and how to get them, and the employment section, unlike AfME, doesn't have all the awful stuff about forward planning and rehabilitation.

The alternative medicine section starts badly with the bit about 'if you have faith in...' but makes it clear there's no evidence for any of it and give a good warning about bogus therapists preying on vulnerable patients.

I think the weakest section is the pacing/management section, which, while it doesn't do the awful thing AfME does with 'pacing up', still says that some people find GET helpful (from their survey) while not anywhere pointing out that the research shows it's useless and the PACE and other trials have been debunked. I think they should say much more firmly that there is not evidence that GET works, and plenty of evidence it's harmful.

I like that they emphasise that pacing is a flexible approach, unlike AfME's daily schedules and plans. I'm concerned at how trusting they are that NHS clinics can be helpful, without sufficient warning that patients can be pressured or talked into believing the therapist knows best.

They have asked for feedback. I think it's worth doing so.
 
Trish said:
To be fair, most of it is fine. There is useful stuff for people in the UK about benefits and other sources of help and how to get them, and the employment section, unlike AfME, doesn't have all the awful stuff about forward planning and rehabilitation.

The alternative medicine section starts badly with the bit about 'if you have faith in...' but makes it clear there's no evidence for any of it and give a good warning about bogus therapists preying on vulnerable patients.

I think the weakest section is the pacing/management section, which, while it doesn't do the awful thing AfME does with 'pacing up', still says that some people find GET helpful (from their survey) while not anywhere pointing out that the research shows it's useless and the PACE and other trials have been debunked. I think they should say much more firmly that there is not evidence that GET works, and plenty of evidence it's harmful.

I like that they emphasise that pacing is a flexible approach, unlike AfME's daily schedules and plans. I'm concerned at how trusting they are that NHS clinics can be helpful, without sufficient warning that patients can be pressured or talked into believing the therapist knows best.

They have asked for feedback. I think it's worth doing so.
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If you have the energy to give them feedback, and you consider it a worthwhile use of your time (and if you don't find it soul-destroying), then please go ahead. You're good at articulating these sorts of issues. I don't personally have the energy for it, and in my experience giving them feedback has never made a difference - CS just posts a copy-paste reply and doesn't ever seem to take on board what people have actually said. Lots of defending themselves, very little actually taking feedback on board.
 
I haven't read all of this new MEA document, and guidance may have changed since my son reached the age of 17 but was it not the case that all children and young people with suspected ME should be automatically referred to a paediatrician for assessment/diagnosis and that having been diagnosed by a paediatrician were reviewed at 6 monthly follow-up appointments at the hospital - or has this policy changed for children and young people and they can be managed within primary care settings?

The PDF I have downloaded has an editing glitch on Page 6:

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OK, I've just checked the current NICE CG53 CFS/ME Guideline, which as we know is under review:

https://www.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."​
 
I don't find the image of a smiling young woman with phone + takeaway coffee in any way meaningful.

Out and about, busy street scene, happy looking, communicating, of the age group the media often selects for a stock image.

Why not a man or a child or a middle aged person? Or someone in bed? Or a wheelchair user instead of an attractive Caucasian female under 30?
 
Dx Revision Watch said:
I don't find the image of a smiling young woman with phone + takeaway coffee in any way meaningful.

Out and about, busy street scene, happy looking, communicating, of the age group the media often selects for a stock image.

Why not a man or a child or a middle aged person? Or someone in bed? Or a wheelchair user instead of an attractive Caucasian female under 30?
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No point complaining to the "Content Manager". Don't they have a "Discontent Manager"?
 
Trish said:
I agree that bit is awful. Totally inappropriate.
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It's dreadful. This document needs pulling and putting out for consultation.

Having ME may have enabled CS to spend more time with his family and his five children - and NR to spend more time with his. But many ME patients aren't well enough for relationships, children etc and some of them will consider they have been forced to spend way too much time with their families - for example, young people who have never recovered enough to live independently from their parents or who depend on another member of the family, for example, a sibling, for care, housing etc. and patients who've never been well enough to consider having children.

The MEA has been around a very long time now - and yet it comes out with something as crass as this.
 
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