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

[Dx Revision Watch]

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 ...

Lots of material on the rolling out of MUS, PPS and integrated IAPT in this thread:

http://forums.phoenixrising.me/inde...ary-care-whats-happening-across-the-uk.48710/

 

[Dx Revision Watch]

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-03-20/HL6204/

Written question HL6204: The Countess of Mar 20-03-2017

Q
Asked by The Countess of Mar

Asked on: 20 March 2017

Department of Health

HL6204

To ask Her Majesty’s Government upon what scientific basis the Expert Reference Group for the Joint Commissioning Panel for Mental Health (JCPMH), in publishing their guide on Commissioning for Medically Unexplained Symptoms (MUS), based their decision that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) should be categorised as a functional somatic disorder, given that the World Health Organisation’s mandatory International Classification of Diseases categorises the illness as neurological under ICD 10-G93.3, and that the National Institute for Health and Care Excellence (NICE) has not listed ME/CFS as a functional somatic disorder; and whether they will withdraw the recommendation for cognitive behaviour therapy and graded exercise to be commissioned for patients with ME/CFS until NICE Guideline CG53 is reviewed.

-----------------------------

Document referred to in Written Question:

http://www.jcpmh.info/resource/guid...rvices-people-medically-unexplained-symptoms/
http://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

Guidance for commissioners of services for people with medically unexplained symptoms

---------------------------------

Written Response:

February 9, 2017
Written Response to Written Question of 20 March 2017:

A
Answered by: Lord O'Shaughnessy

Answered on: 28 March 2017

The Joint Commissioning Panel for Mental Health is not a Government body, it is a collaboration between 17 leading organisations including the Department of Health, and is co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners. The Department was not closely involved in the writing or production of this document.

The National Institute for Health and Care Excellence (NICE) is currently reviewing the guidance GC53 to consider whether it should be updated to take account of new evidence. NICE are expected to reach a decision on whether the guidance should be updated in summer 2017.

 

[SilverbladeTE]

Causing the deaths, ruin, poisoning by giving wrong medication etc of THOUSANDS of people is NOT a "side issue"

but then again, in the dirty, slimy, backstabbing, treacherous, inbred, wahoo, Oxbridge, mass murdering SCUM system of the UK, well yes it may well be a "side issue".
under its pretence of Middle Class niceness, the UK's Establishment are pure bloody evil.

And consider this
https://www.yahoo.com/news/oxford-s...ared-jail-extraordinary-talent-144954285.html
a rich well to do "Oxbridge" person who studying to be a doctor, gets away with stuff that would get a pleb jailed for a good few years.
because like, their "potential" is too much to jail them for!
in other words, the "professional classes" are above the Law and that is proof.

Remember Dr John Bodkin Adams, Shipman and others.
And regarding the danger the medical profession poses to the patient, ye olde fictional Sherlock Holmes had a very good warning on it, Conan Doyle speaking through his character's lips that someone with a medical licence not only knows how to commit terrible crimes and possibly get away with them by skill, but also has the social cachet that prevents most people suspecting them of evil.
(I note that's NOT one of the quotes you'll find on the web, alas, and my rusty old brains don't remember it in detail)

and regarding MUPS

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth

THAT is the basis on which real Science works.
Psychs work on baloney, hogwash, hot air and showmanship

 

[Countrygirl]

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

@Molly98 I would recognise you anywhere and that blue ribbon is certainly a give-away!

 

[Dx Revision Watch]

Prof Rona Moss-Moris is National Advisor to the department of Health for IAPT for LTC/MUS.

 

[Ysabelle-S]

I personally don't believe NICE will act in our best interests. I have no optimism regarding any update on their recommendations this summer.

 

[Jenny TipsforME]

@Molly98 too ill to read full thread but I am also blocked. I don't perceive either of us were rude, just articulating Patient perspective. Says even more about their attitude to patient engagement! Don't engage in debate, just block!

 

[Ysabelle-S]

A lot of people have responded to this tweet since I last looked. You can click on it and see the comments below:

https://twitter.com/i/web/status/865169080956977152

 

[SamanthaJ]

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.

Your comment made me think about how some of the marketing and social media around these 'medical' events is more like what you'd expect to see come out of a lifestyle guru pyramid scheme type thing.

 

[Large Donner]

Your comment made me think about how some of the marketing and social media around these 'medical' events is more like what you'd expect to see come out of a lifestyle guru pyramid scheme type thing.

I really suspect that those in the know are promising to carve up the NHS and privatize it and this is why they are starving it of money and pushing memes like, "x amount of doctors time is taken up with MUPPS." The "lifestyle guru pyramid scheme type thing", people are positioning themselves for where they think the market will go and how they will sell their "skills" next.

 

[Jonathan Edwards]

This answer is really very thin. Would a meeting on hypothyroidism have been billed ' A Day with the Cretins' (cretin is the official medical term for congenital hypothyroidism) or a meeting on learning difficulties A Day with the Morons'. Even if this is lighthearted self-deprecation it says something very telling about the seriousness with which these doctors treat what they call MUS.

I do not think it is unreasonable to inform the police. This is well within the remit of discrimination acts.

I am appalled, yet again.

And I would seriously question whether this material should be considered valid for professional training. Nobody knows what the best way of dealing with any of these problems is and yet the slides give clear advice on what to do. It is simple quackery. Decide what you think ought to be good treatment and then tell your friends how good it is, without any evidence.

Maybe Dr Dave Bartle would do well to spend a few evenings perusing Phoenix Rising threads to get an idea of the intelligent reasonable critique they provide in contrast to the flannel he has at his meetings. Sometimes I wish I did twitter but mostly I am thankful I do not.

 

[Molly98]

@Molly98 too ill to read full thread but I am also blocked. I don't perceive either of us were rude, just articulating Patient perspective. Says even more about their attitude to patient engagement! Don't engage in debate, just block!

I know they don't want any dissenting voices to be heard, people may begin to start asking questions.

@Countrygirl do you have an additional award over there for our comrade @Jenny TipsforME ?

Were you ever a teacher @Jenny TipsforME ?

 

[Hutan]

Here's everything I tweeted before I was blocked:

I'm just catching up with this thread. Lots about that tweeted slide about what paediatricians should do in an appointment has annoyed me. There's nothing about ruling out treatable conditions. And just what evidence do they have for successfully determining the predisposing, precipitating and prolonging factors?

And that thought bubble in the happy peach colour about letting the patient choose a treatment

Ooh I get to choose what I want to use!

What an illustration of a patronising 'pat on the head' attitude.

If all the treatments to hand are fairly ineffective then yes, I guess, it makes little difference with respect to improvement whether it's a highly trained paediatrician or a child making the decision. (Side effects might be another matter)

I suppose it's a small mercy that they aren't saying 'you must do CBT and GET'.

 

[JoanDublin]

Here's everything I tweeted before I was blocked:
View attachment 21293 View attachment 21294 View attachment 21295

If you want to really annoy the shit out of them, rewrite your tweets and add in the hashtag #swpc on every one of them. That way anyone looking up that hashtag for information will see them. You might like to add in a tweet at the start that you are rewriting a series of tweets as @SWPaedsClub blocked you for tweeting earlier.....

 

[Large Donner]

Just a note on the "South West Paediatric Club". Is this is like the BRS which is not really any thing that has official status as we found out recently after Crawleys last Fiasco.

I mean "Club" ...really!!!??? Just how does one get into this club? It seems such a bizarre term to use for a collection of medical professions day on presenting "medical evidence".

The word club doesnt even attempt to hint at a veneer of official standing or openness to un vetted members. I know any group of people can set up an Organisation or Association, but..... Club....really!!!??

 

[Ysabelle-S]

https://twitter.com/i/web/status/865141365650444288

https://twitter.com/i/web/status/865207548617601024

Someone has deleted a tweet. I don't know if it's a different person. I don't think the second tweet was from the same account as the first.

 

[Gday]

Beyond disgusted at yet another scam to undermine ME. The apology was pathetic but the real question is who wrote this, why and who approved this agenda. I believe these type of lectures have been going on for years. It has Ester Crawley's signature all over it. Where is the science? Pure drivel on the slides that I saw. My postman would have more idea!!

Frightening how far away from real medical care our children are but more worrying is how many medics are ignoring all physical symptoms for this drivel.

 

[Dx Revision Watch]

http://www.swpc.org.uk/about.htm

http://www.swpc.org.uk/membership.htm

Constitution:

http://www.swpc.org.uk/constitution.pdf

 

[Ysabelle-S]

The tweet with the Wessely quote has also been deleted. Interesting that stuff like this is being pulled.

 

[RogerBlack]

Someone has deleted a tweet. I don't know if it's a different person. I don't think the second tweet was from the same account as the first.

http://forums.phoenixrising.me/inde...he-mupp-ets-and-more.51518/page-9#post-851262
Was this.
"Replying to @SWPaedsClub @roryconn
Sadly true. We spend a lot more time learning how to Ix / Tx organic pathology than what to do if no organic problem" with a simon W quote (image in above post)