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

[InfiniteRubix]

I think insensitive use of language needs to be called out when it happens, so they can be made aware of it and try to improve.

Definitely. That word "gain" is wrong, even net arithmetically due to other debits that occur... The whole concept is dangerous are requires extreme care and caveating in the context of ME's history.

However, there has been a tendency in some materials from the MEA to play down the more severe difficulties of living with ME and try to 'look on the bright side' which some may find helpful, but many others find upsetting and crassly insensitive. I think insensitive use of language needs to be called out when it happens, so they can be made aware of it and try to improve.

Agreed - suggestions for improvement need to be made. I'd also add that these documents are also for employer consumption - there is a very miserably difficult balancing act to be made in the choice of messaging, between informing and terrifying the potential or current employer. Facts are facts, but tone is a choice. Honestly, I wouldn't like to be on the charity end of serving members who are a mix of unemployable, barely employable and largely employable pwME.

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

Very fair point (Hopefully my own comments already show that I'm definitely not saying that no feedback is needed). Do they normally consult that way? I can think of certain other better funded charities that would also benefit from prepublication consultation...

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 wasn't aware of this. An honourable move that I'm sure took some serious consideration. I've been in legally critical whistle blowing contexts, which even extended into a parliamentary enquiry, and it is not fun/cheap/untraumatic to do the right thing. Most of the beneficiaries never even know about it.

I don't think people are being unreasonable on this thread. We are simply commenting on parts of a document that we find disappointing in the hope that it might be improved.

I don't see anyone here being "brutally unfair or cruel" - but exasperated people raising points of concern

I don't see this criticism on this thread as being personal to him or anyone else.

Given specific contexts that I've seen on FB, which is the dominant information source for many people, I am extremely uncomfortable about personalising critique of the MEA around CS (regardless of him not being the MEA in one person). However unobvious it appears, I do see a continuum of pack behaviour around his name, with the topic extending into this thread. It is part of something wider - we are a rightly very frustrated community and he is effectively Dr MEA, which puts him in the firing line and he is all to often rolled into other frustrations. Drawing parallels with A4ME's decimation of sufferers is extremely loaded also.

I just really wouldn't want people who have only gotten their opinions from certain FB discussions to come across this thread without these caveats.

If CS didn't exist, you would have to invent him. And when he retires eventually, he is one of MANY succession problems we face. I'd prefer that he chooses to delay that decision, however near or far that may be.

can assure you he has a thick skin.

In relation to this thread alone, sure, he's a grown lad. In relation to the overall continuum mentioned above, less fun.

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

Entirely depends. There are many other situations where the pwME will see more of some family/others because of their ME. Assuming you like seeing them and appreciate seeing them more, that's a plus. But a "gain" it is not....

 

[InfiniteRubix]

that extends into this thread

...the topic at the subject of the FB pack behaviour extends into this thread. The topic. Not the pack behaviour per se!

Badly written

 

[Invisible Woman]

...the topic at the subject of the FB pack behaviour extends into this thread. The topic. Not the pack behaviour per se!

I am not on Facebook, but I disagree.

I don't see why people on this thread and this forum should have to self moderate comments and criticism of the MEA or Dr Shepherd because of the behaviour of Facebook members. Just because it's discussed there doesn't mean we can't discuss it here as long as we abide the rules of this forum, surely?

I stand by my comments here, in this thread.

I have also said somewhere in various threads in this forum that I wouldn't have managed to get ESA without input from the MEA. I have also mentioned that I have found Dr Shepherd 's contribution very helpful, to me personally, over the years.

My criticism here doesn't negate that but nor does their past good work give them a free pass when they get it wrong.

 

[Trish]

I do see a continuum of pack behaviour around his name, with the topic extending into this thread.

Given that it's his name printed as author of the document under discussion, it's reasonable that his name is mentioned in this context.

 

[InfiniteRubix]

Given that I've now highlighted my concerns here on the thread, I'm more relaxed re CS.

Again, to be clear, I don't see pack behaviour here. It's a coincidence of continuum, which I think is understood, from @Invisible Woman and @Trish's replies. I don't doubt intentions or motives.

 

[DigitalDrifter]

I didn't like that they had a section on alternative therapies even though they mentioned that they aren't proven. Also they didn't mention long term damage from exercise.

I found a problem with this page:

https://www.meassociation.org.uk/20...tle-with-the-crippling-condition-24-may-2019/

Here they quote a newspaper saying about the PACE trial "The original results of the £5million trial showed that CBT and exercising benefited up to 60 per cent of patients.", "But a re-analysis of the findings, fought for by critics, showed the true results to be much closer to the 20 per cent mark".

I think those figures are misleading.

 

[Snow Leopard]

Not only has ME caused me to have to split from some family members, lose friends it has also left me too unwell to have children. I might have been physically able to produce one, but certainly not capable of looking after it and because of the rift caused by ME I wouldn't have had wider family support.

That's before we get to the friendship lost and new friends I wasn't well enough to make.

That comment about gains is offensive. Considering the number of patients driven to suicide in isolation it is deeply so.

Yes. They can fuck right off with that comment about "gains", it is very insulting and shows how out of touch they are with many patients.

 

[NelliePledge]

Yes indeed no doubt that as someone who was gradual late onset and had 32 year career I was in a position where I managed to get ill health retirement some snidey psychosomatic proponents would imply I’ve gained from having ME. Yeah right if they want to swap me my pension and my health for their job and their health bring it on and then we can talk about gains........

MEA not perfect by any means and they need to be more open to direct input from patients in this sort of material rather than sticking to the way they’ve done things for the last 10 years. Also they have a rose tinted view of the current situation in the NHS based on a few clinics that did slightly better by patients. But I also recognise they do good stuff. The purple book is one of those things but seminars for GPs based on the purple book are needed rather than expecting a book to make any significant impact.

 

[Wits_End]

I can understand the reference to "gains" in the sense of the supposedly typical pwME being someone who's very driven and overworked (not for nothing was it nicknamed "yuppie flu") being forced to slow down and cut down on work/activity at one end of the spectrum, but NOT e.g. in the case of my caree, who would love nothing better than to be able to spend quality time with family, but was only able to manage 10 minutes when they last visited I don't get the feeling the potential severity of the illness is being recognised/acknowledged here.

 

[Amw66]

Yes indeed no doubt that as someone who was gradual late onset and had 32 year career I was in a position where I managed to get ill health retirement some snidey psychosomatic proponents would imply I’ve gained from having ME. Yeah right if they want to swap me my pension and my health for their job and their health bring it on and then we can talk about gains........

MEA not perfect by any means and they need to be more open to direct input from patients in this sort of material rather than sticking to the way they’ve done things for the last 10 years. Also they have a rose tinted view of the current situation in the NHS based on a few clinics that did slightly better by patients. But I also recognise they do good stuff. The purple book is one of those things but seminars for GPs based on the purple book are needed rather than expecting a book to make any significant impact.

Yes. My GP practice had the book for 18 months before they looked at it ( after a suggestion )

 

[Dx Revision Watch]

The ME Association has, in the past, put Resolutions for proposed changes to the wording of its Memorandum and Articles of Association (the Association's governing/constitutional document) which has given the Board of Trustees control over who can and who cannot be nominated for election to the Board out for postal vote by the membership.

Some years ago, the case for and against changing the name of the Association from The Myalgic Encephalomyelitis Association to The Myalgic Encephalopathy Association was also presented to the membership via its magazine and a membership postal vote held.

Rather than publish this document on the website - then ask for feedback when the document is already live - the MEA had the option of publishing a draft via its magazine and possibly also on the website, clearly stamped as a draft, inviting review and feedback from its members and its wider constituency.

Responses to formal consultation processes, for example, drafts of revisions of NICE Guidelines, should also be put out for consultation, if this is not already being done.


It should not be forgotten that the Board of Trustees (which has considerable influence over the organisation's direction and policies and complete control over who can and who cannot stand for election in its trustee election process) manages an organisation which is run without a CEO or policy manager.

But is not their personal fiefdom.

It exists for one purpose only - which is to represent the best interests of the organisation's members.

Some of the trustees have sat on that board since 2003 - "going round again" each time their term has ended and been voted back onto the board. It is their right stand for re-election when their terms come to an end and the right of the membership to vote them back in again.

Quite recently, one board member, Neil Riley, came under criticism on this forum for the content of an article he had published in the magazine.

None of the board members are above constructive criticism around what it published in the name of the Association or by individual board members.

Note: I am not a member of the ME Association and was twice denied membership in 2004, firstly by "Officer's Action" in between meetings of the Board of Trustees and secondly, via a vote following discussion of my application tabled on the Agenda at a meeting of the Board of Trustees and Minuted. I have not submitted further applications for membership since 2004.

 

[Milo]

The next section says most PWME should be managed by a GP. But why? Most GPs have no expertise in the field. I am not sure that GPs should manage anything these days. The residual role of the generalist is to sort out which patients need to see which expert. We don't have village blacksmiths any more

This is an important quote from you as a physician, @Jonathan Edwards thank you so much for recognizing this. Family physicians not only have no expertise in ME, (they all read from the same Uptodate and parrot to their patients that they should be better in a year or 2), they have no time and/or no interest to learn and to pull up their sleeves. Then they are not sufficiently paid to spend time with their patients like a specialist does. It is much a disservice to the disease as a whole and then to the patients to insist there should not be specialist care for them. Diseases that have benefited the most from solid research, have been housed under a medical specialty, where specialists only see their kinds, or similar kinds, and then gather to conferences to discuss the science and advances.

How is complexity addressed in a family practice? ‘oh, sorry don’t have time’. Or ‘I am afraid we are no longer a good match’. Or ‘have you tried yoga’? Or ‘here, take the Prozac, you’ll feel better in couple of weeks’

 

[Dx Revision Watch]

This is an important quote from you as a physician, @Jonathan Edwards...How is complexity addressed in a family practice? ‘oh, sorry don’t have time’. Or ‘I am afraid we are no longer a good match’. Or ‘have you tried yoga’? Or ‘here, take the Prozac, you’ll feel better in couple of weeks’

Or 'can I refer you to this new IAPT/MUS/PPS service?'

 

[Dx Revision Watch]

Or 'can I refer you to this new IAPT/MUS/PPS service?'

Or, if you are unlucky enough to live in the Devon area:

'I'm removing your historical diagnosis of ME and re-assigning a diagnosis of MUS/mental disorder and referring you for..."

 

[Sly Saint]

The purple book

I've never seen/read a copy so have no idea of the content.

But this is unfortunate:

Physical signs of child sexual abuse - evidence-based review
Also known as the 'purple book', this guidance is for best practice and issues of clinical practice to aid clinical decision-making in examining children referred for evaluation of possible sexual abuse. Here, you can request or purchase a print edition.

https://www.rcpch.ac.uk/shop-publications/physical-signs-child-sexual-abuse-evidence-based-review

 

[InfiniteRubix]

Or, if you are unlucky enough to live in the Devon area:

'I'm removing your historical diagnosis of ME and re-assigning a diagnosis of MUS/mental disorder and referring you for..."

One of many examples of how it has been rational for me to avoid my GP like the plague and not see them for over two years.

They are dangerous to my best use of time, my health, finances and good humour. The administrative risks and implications of their ignorantly waving a pen at will terrify me.

I've never seen/read a copy so have no idea of the content

Preview available on Kindle app I think

 

[Dx Revision Watch]

I've never seen/read a copy so have no idea of the content.

But this is unfortunate:

https://www.rcpch.ac.uk/shop-publications/physical-signs-child-sexual-abuse-evidence-based-review

Yes, it is unfortunate that both publications are known as the "Purple Book". But the MEA has been referring to their own "Purple Book" for quite some time.

 

[Cheshire]

Posts discussing MEA history and structure have been copied or moved to this thread:
ME Association staffing and structure

 

[ProudActivist]

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.

​

absolutely. Telling people that they should be grateful for some side gains is inexcusable. We may sometimes feel grateful for small things but they come with such a sting in the tail and cannot be generalised about. My positive attitude, when I manage one, is my own business and we don’t need to be made to feel inadequate because we are not managing to find things to be glad about. Telling is to feel good about aspects of our situation is not helpful, especially generalising about people’s home situations.

 

[Invisible Woman]

I can understand the reference to "gains" in the sense of the supposedly typical pwME being someone who's very driven and overworked (not for nothing was it nicknamed "yuppie flu") being forced to slow down and cut down on work/activity at one end of the spectrum, but NOT e.g. in the case of my caree,

There is no evidence that the "typical" ME patient exists. This overworked, driven stereotype was invented by the BPS brigade and then this information was spread by the media. Then they added insult to injury with the term "yuppie flu".

ME affects all genders, social & economic classes and races. It encompasses people with all sorts of different outlooks on life too. It affects artists, scientists, bookworms and athletes. If you're human, you can become ill with it.

I am glad @Wits_End, that you caree has someone who is sensible and cares enough to look beyond this 30 year old stereotype. I know from many of your posts you work hard looking for ways to provide the best support and care possible. The fact you're here and joining us in the conversation proves that.

However, many carers, friends, families and health care professionals simply go along with the false narrative. It is not that ME is unknown and unheard of. It's the default view is a wholly negative and inaccurate preconception.

This 10 key aspects guide doesn't even begin to dispel that, in my opinion, let alone reflect the true burden of the disease on all aspects of a patient's life. It will simply lead to very sick people being further marginalised & misunderstood.