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

[Countrygirl]

OOhh, I am blocked from @SWPaedsclub, not allowed to view their posts or comment anymore

That is praise indeed, @Molly98 . Very well done!

 

[dangermouse]

Anyone need a new avatar?[/QUOTE

 

[Molly98]

That is praise indeed, @Molly98 . Very well done!

Thank you @Countrygirl can I please have a sticker or badge of honour?

Not that I really wanted to be associated with a club with such an unfortunate name anyway.

 

[RogerBlack]

How did they delete your comment? Can people do that on twitter? Or was this facebook somewhere?

(People posting stuff here is drawing me to social media... but social media is not for me!)

I deleted that message, after I realised I can't work twitter.
They did not.

 

[Yogi]

Organisations can change... but people have now stopped telling me that I need to give Sonya a chance to change things. I think that she's happy to tell people what they want to hear (which led to some false hope amongst those wanting AfME to turn itself around), but only it doesn't involve taking a stand against anyone with real power.

Precisely "but only it doesn't involve taking a stand against anyone with real power." or real change.

 

[dangermouse]

Is the NHS now being run by the bPs(ers)? Only that paediatric conference seems to have a hefty dose of psychological/somatic topic.

It seems that a large portion of the general public will now be known as a MUP (or whatever new name) when they present themselves with an unexplained symptom that causes heart sink.

The new BPS MUS clinics will be busy! Nearly everyone I know has (at some time) has had an unexplained pain or other symptom.

There are four people that I know who have IBS.

I really don't like the direction that our health service is going.

I am not at all happy with ME being presented at this conference, it is not MUS. I do hope that @charles shepherd and MEA will be strongly addressing this.

If anyone is on Twitter (and has energy) Andy Burnham MP may be a good person to be made aware of the Muppet scandal, the recent Renal scandal and the ongoing MUS scandal.

 

[trishrhymes]

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

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

 

[Molly98]

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

You go girl !

 

[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?'

 

[Orla]

Anyone need a new avatar?

Ha ha, done, I think!

 

[trishrhymes]

Here's everything I tweeted before I was blocked:

 

[lilpink]

When MUPS is exposed they will come up with another name.

Yes: PPS. Persisting Physical Symptoms.

 

[Snowdrop]

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?'

Perhaps someone can point out that this is ideology not science. Or pseudo-science aiding and abetting ideology.

 

[Daisymay]

The difference is very clear and obvious.

One was a misjudgement, probably by a junior medic, who never wanted to be on the committee anyway, and certainly did not want to be responsible for the publicity for the meeting. He or she probably never contemplated that "muppets" would be regarded as anything but a reference to members of the club.

The other wasn't.

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.

 

[Ysabelle-S]

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

So they blocked you, and your tweets were reasonable. The problem is this is about power, abuse of power, and people thinking no one, certainly not patients, have the right to challenge them or (heaven forbid) show greater knowledge of an illness. Their almost non-existent knowledge of ME is solely their own responsibility. They have done nothing to correct it, and blocking patients with longstanding knowledge of the illness, and of the research, only shows they are wilfully deaf to reason. They only want to hear from those that agree with them. They want to be praised, promoted. This is as much about professional ego as anything else. Meanwhile child and adult patients continue to suffer.

It's almost as if these doctors have not joined us in the 21st century (unless it's the post-truth part of the 21st century). They have a total disregard for patient knowledge or opinion. We are like the children of the past, to be seen (by them) and not heard (unless it's to passively agree with them, regardless of the cost to ourselves and our lives).

 

[dangermouse]

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 agree, it is absolutely misguided and wrong to call these diseases MUPPS or MUS or PPS or whatever new fanciful name they invent.

It's time for all of this nonsense to end. Enough is enough.

 

[Molly98]

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

Well done Trish, I do find it amusing that we have been blocked seeings we don't even know our way around twitter and are complete novices it's quite an achievement.

 

[Cinders66]

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?

 

[dangermouse]

So they blocked you, and your tweets were reasonable. The problem is this is about power, abuse of power, and people thinking no one, certainly not patients, have the right to challenge them or (heaven forbid) show greater knowledge of an illness. Their almost non-existent knowledge of ME is solely their own responsibility. They have done nothing to correct it, and blocking patients with longstanding knowledge of the illness, and of the research, only shows they are wilfully deaf to reason. They only want to hear from those that agree with them. They want to be praised, promoted. This is as much about professional ego as anything else. Meanwhile child and adult patients continue to suffer.

It's almost as if these doctors have not joined us in the 21st century (unless it's the post-truth part of the 21st century). They have a total disregard for patient knowledge or opinion. We are like children, to be seen (by them) and not heard (unless it's to passively agree with them, regardless of the cost to ourselves and our lives).

Obviously didn't want those tweets to be seen by others and promote awareness and interest into what is a huge shameful scandal.

 

[Countrygirl]

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!