Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more

[dangermouse]

To be honest In the UK I don't know how much we with M.E are living in our own informed and active "biomedical research" aware bubble and missing the seemingly increasing move to put M.E in with MUS in the UK . So on top of the type of conference discussed today with a powerful CFS individual involved there's been the royal college of psychiatrists in March doing the big lump mind and body conference featuring our friend Peter White as the CFS representative. I know there's been discussions about this recent literature from the joint group of GPs and psychiatrists lumping ME as a MUS and there's the ongoing persistent body of annoying psychologists such as Rona moss who basically are pretty powerful and they subsume CFS /ME into the MUS speak plus they are using the persistent physical symptoms speak too. Which leads me onto the next area of concern with supposedly some of our lot also moving to embrace MUS as the lumping of CFS in the north east and north with the northern association of persistent physical symptoms led by Zoe gotts (researcher funded by MEA & MERUK) and I think Julia Newton MIGHT BE involved, I'm not sure but I'm pretty sure she presented at a conference of theirs a few years ago. This is literature produced by them
http://www.ahsn-nenc.org.uk/wp-content/uploads/2014/12/Referral-Map-V2-October-16.pdf
And we have seen the move to the Cumbrian service basically broadening to fatigue MUS and CFS and a behavioural BPS approach at the fore.

Another area rarely discussed in the UK, is it likely that medical students are going to be being taught about CFS through the prism of MUS /psychological therapies etc ? And if so we have a massive issue getting M.E recognised as a discrete , serious, organic systemic disease don't we?
Lumping ME in with often lesser functional conditions or unexplained fatigue and approaching it from a "management or psychological therapy as treatment" perspective is surely going to greatly impede our efforts to get ME respected and researched as it needs to be?

I rarely visit the GP. For a start off I'm too unwell to attend. When I do go it's not in relation to ME. I have been sent to two CFS clinics and both made me worse. I wait, patiently (as best I can) for Ron Davis and others.

 

[user9876]

https://twitter.com/i/web/status/865152663763243009

Here is an example of blaming the patient for being ill. If they had been more positive then they would have been protected or rehabilitated!

 

[Large Donner]

Cheylee

EDS UK presents its first patron...
Interview by Lara Bloom

Some of you may know Cherylee Houston. Cherylee made history when she became the first full-time disabled actress on the famous TV soap Coronation Street.

Not only is this a fantastic representation for disabled people, it is even more special for us as Cherylee suffers from Ehlers-Danlos syndrome both in real life and in character.

Cherylee, 35, has been in a wheelchair since she was 23 having been diagnosed with Ehlers-Danlos Type Hypermobility type.

https://www.ehlers-danlos.org/about-us/our-patron-cherylee-houston/

Do the EDS charities know about this "MUPPETS" day today and that the above patron is being described as a medically unexplained non organic illness person who wastes doctors time with their delusional beliefs about being ill?

 

[Molly98]

I hereby award @Molly98 and @trishrhymes a each for their sterling service today on behalf of the SW's Monstrous Regiment of Women in their attempt to highlight poor science and harmful medical practice.

Congratulations Ladies!

The SW is proud of you!

I am so very honoured to be accepting this award. There is very little in life I get to achieve anymore, so being given this award brings me great happiness and tears of Joy . I am immensely proud, thank you.... thank you.... thank you.

it's not every day two former Teachers get blocked by doctors for being such bad ass militant Twitter terrorists

 

[SamanthaJ]

To be honest In the UK I don't know how much we with M.E are living in our own informed and active "biomedical research" aware bubble and missing the seemingly increasing move to put M.E in with MUS in the UK

I agree. They don't even seem to feel the need to produce 'research' anymore, they take a leaf out of the politicians' book and just keep saying it over and over until people assume it must be true. And now they're including EDS, which makes you wonder how far they'll try to take it. They won't get away with it forever, but they're doing surprisingly well so far.

 

[Countrygirl]

it's not every day two former Teachers get blocked by doctors for being such bad ass militant Twitter terrorists

Just soo proud .....teachers too! Ample bosoms swelling with pride!

 

[Countrygirl]

I agree.. They won't get away with it forever, but they're doing surprisingly well so far.

How high will the body count have to be though??

It is already pretty high for ME.

Some of you recall that I lost a good friend of 30 years standing last August. He developed what was diagnosed as CFS and despite huge efforts I could not find a single doctor to help him and he finally took his own life after ten months of illness. The doctors responsible lived close to the conference centre today.

 

[Ysabelle-S]

I agree. They don't even seem to feel the need to produce 'research' anymore, they take a leaf out of the politicians' book and just keep saying it over and over until people assume it must be true. And now they're including EDS, which makes you wonder how far they'll try to take it. They won't get away with it forever, but they're doing surprisingly well so far.

The fact that quackery is having an easy time of it in the British medical profession is in itself an indictment of the medical establishment here, the attitudes prevalent in the education and training of doctors, and the prevailing careerism of the professional networks.

 

[Daisymay]

I agree leopard does not change spots. However good to and need to put pressure on them and expose AFME them so they have no members or funds and go into liquidation and close.

I agree too!

 

[Ysabelle-S]

How high will the body count have to be though??

It is already pretty high for ME.

Some of you recall that I lost a good friend of 30 years standing last August. He developed what was diagnosed as CFS and despite huge efforts I could not find a single doctor to help him and he finally took his own life after ten months of illness. The doctors responsible lived close to the conference centre today.

So tragic what happened to your friend. So many patients have died. And this fact is either not getting through, or they literally don't care. Also, when it comes to suicide, and not all the deaths have been suicide, they will always spin it to suit their own psych agenda, rather than address the real situation of medical abuse and neglect of patients on top of a horrendous and untreated disease.

 

[Ysabelle-S]

Disgusted by this bio I came across earlier: 'Child Psychiatrist/ Academic who believes that it is easier to build strong children than fix broken adults. Could childhood psychosomatic symptoms be the key?'

Just reflecting on this appalling bio again - broken adults. I mean, that in itself is appalling. And that's before you get into the whole psychosomatic bandwagon crap. Broken adults - who the hell is she to talk about broken adults? What is WRONG with these people? I cannot even get my head around the rampant disrespect of these so-called professionals. There is something terribly wrong with British medicine. There is something terribly wrong in academia. And it partly comes down to the fact it's usually well, able-bodied people acting on or 'researching' people who are ill or disabled, experiences the former usually don't have, except in passing. They are constantly othering marginalised groups, with an eye on how to get ahead in their careers. If there were more ill and disabled people in academia, challenging this bullshit, there might not be so much of this disgusting mentality running riot in universities and healthcare.

 

[lilpink]

is it likely that medical students are going to be being taught about CFS through the prism of MUS /psychological therapies

From what I understand from contemporaries of today's med students the MUS train left the station years ago. Everyone from A&E to Gps, any discipline you like, is taught to consider a psychosomatic diagnosis right at the beginning of every consultation. If I am mis-speaking, I'm only relating what was told to me by reliable sources.

 

[Snowdrop]

They want to be praised, promoted. This is as much about professional ego as anything else. Meanwhile child and adult patients continue to suffer.

I may be going off the reservation with this one but now a few people have made similar points in varying ways.

Someone called it careerism -- I agree. It seems also like a kind of branding. A product to sell. With cute acronyms and a lot of boilerplate talk that is void of any real content. It just happens that they chose this particular niche (and once chosen even they are stuck with the vagaries of the market in that it is difficult to change mid career to something else). But the kind of people who are attracted to this could be selling anything. The belonging and marketing is what produces the true believers. You can see this with corporation employees of ever so many products/services. They are invested (literally and figuratively).

This fact needs more exposure.

 

[Ysabelle-S]

I may be going off the reservation with this one but now a few people have made similar points in varying ways.

Someone called it careerism -- I agree. It seems also like a kind of branding. A product to sell. With cute acronyms and a lot of boilerplate talk that is void of any real content. It just happens that they chose this particular niche (and once chosen even they are stuck with the vagaries of the market in that it is difficult to change mid career to something else). But the kind of people who are attracted to this could be selling anything. The belonging and marketing is what produces the true believers. You can see this with corporation employees of ever so many products/services. They are invested (literally and figuratively).

This fact needs more exposure.

Yes, I agree with that analysis.

 

[SamanthaJ]

How high will the body count have to be though??

It is already pretty high for ME.

There's no justice or logic in what's happening. How can so many doctors be so callous or credulous? Will they look back with shame and regret at their collusion in this? I am so sorry about your friend.

 

[Chrisb]

One doctor may have come up with the name (or maybe it was a group of them came up with it as a joke, we don't know) but everyone else involved with this meeting seems to have gone along with it, as usual it's taken patients and parents to shame them into action, and even then carrying on calling these diseases MUPPS is totally ignorant and out of order. Thefe really is no excuse.

I hear what you say, and if someone can indicate the evidence that expressly or impliedly shows that the term "muppets" was intended to apply to the child patients as a term of abuse, rather than to the doctors themselves, in jest, I will agree with you.

Until such evidence be adduced I will remain of the view that we should not be diverted from the substance of the issue, which here is the content of the lectures, and the purpose behind the meeting . There is no point in putting all one's energy and resources into attacking an easily defensible position-which, has been easily defended.

The problem which I have is that your argument seems to have changed from objection to the term "muppets", to objection to use of the absurd "diagnosis" MUPPS, and the indoctrination of more doctors into this belief system. This should be the central strategic issue. I tend to prefer a focussed attack on central issues rather than being distracted by side issues.

 

[Jo Best]

Why is it I still don't fully believe it though? Maybe that is what they say officially but there is too much of an incestous relationship with these parties.

They are still funding that research study, and working on MEGA with her though. I have a lot of concern about AfME's links with Crawley, just want to avoid ever going too far with them.

I think this is why she isn't an official medical advisor to AfME, i.e. to put some distance betweeen the charity and her research funding applications as they've had a lot of stick over conflicts of interest.

Might be worth asking AfME who they regard as an advisor on paediatric ME now that they have a Children's Service.

 

[Luther Blissett]

Any other of you bad ass ME militants been blocked or is it just me. do they not like cats?

I'm tweeting. Amazed not blocked yet. Maybe receiver too enthralled by Crawley...

Edit. I spoke too soon. I'm blocked too.

Well done to all involved in the pushback !

I have no badges or trophies to award, but I am going to award you all something better than being described as MUPP(ET)S...

I needed an acronym of course, (so cutting edge)

Move over Muppets, I give you the fighting brigade of

Frustrated at Learning of Unprofessional Medico Psycho Stigma.

some behind the scenes access was granted to a strategy session earlier...

Clearly explaining to Grandpa Flump how to use social media.

Refreshments for the for the 1st Core Phoenix Rising Battalion will now be served...

(c/o http://flickriver.com/photos/26504183@N07/sets/72157605681277426/ )

Further operations may be planned my inside sources say, with new tactics being deployed...

THE FLUMPS by TOYPINCHER, on Flickr

 

[Wolfiness]

So tragic what happened to your friend. So many patients have died. And this fact is either not getting through, or they literally don't care. Also, when it comes to suicide, and not all the deaths have been suicide, they will always spin it to suit their own psych agenda, rather than address the real situation of medical abuse and neglect of patients on top of a horrendous and untreated disease.

It's worse than that. They're mystified.

www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)00270-1/fulltext

 

[Large Donner]

There's no justice or logic in what's happening. How can so many doctors be so callous or credulous? Will they look back with shame and regret at their collusion in this?

I don't think they ever will, because as is evidenced by EDS being included in this day, they are slowly boiling frogs in the medical profession. This seems like a test to see how far they can push it to date, the end goal is to add MUPPS to every single diagnosis and to push the mind-body paradigm as far as they can for every illness. That is already stated fact for the next DSM.

The people doing this are not real doctors or scientists they are the same kind of people who work as psychic mediums and self proclaimed health gurus, unfortunately they do have degrees in the soft sciences which allows them to manipulate the busy and the weak in the rest of the scientific fields. It also helps that they get into bed with the worst kind of politicians and the worst of the insurance industry.

It also just so happens that both of those groups allow the worst of the worst to float to the top to be the managers because everyone else actually has real skills that they are getting on with.

Its just so terrible that so many are then willing to take direction and orders from the ones with the least true skills.

On top of that there is a very dubious massive campaign to "destigmatise mental illness" all over the media. It has celebrity after celebrity "coming out as mentally ill". This basically means that in a country with socialized medicine the government wants to label more people as mentally ill, and from a younger and younger age, that's a fact.

On top of that we have the BPS school pushing lies out about "militant minorities being anti science and opposed to psychiatry" etc. We also have people like Simon Wessely behind the "mindfullness in schools" programme, collecting info on how children from the age of five think and what they think and telling them what to think. And further, nearly every reality show aimed at young people has a psychologist on it bitching about everything that everyone does, how they think, and how its always wrong whilst they sit making pronouncements like the new priest class.

Now just think about what that means!!!!