BACME's new clinical guide to practical management of M.E. for healthcare professionals

[MeSci]

These people will defend PACE to the bitter end. Their philosophy is quite touching in its simplicity: if you say something over and over and over then it's true. Otherwise known as lying.

That and the 'satire' suggestion gave me an idea for some publicity that could catch on or even go viral if done well. It would be very 'British' in comedy style, which would of course be appropriate. Maybe on YouTube?

It would involve a mock competition to see who was the best liar out of the psychoquackery mob, complete with quiz-style sound effects when contestants did well. The winners and runners-up would acquire logos to illustrate their achievements, e.g. 2015 'Liar of the Year in Quackery category', 'Runner-up in 2015 Liar of the Year', etc. A good hacker could stick these logos on the quacky websites and other appropriate places.

 

[Sean]

One thing the guide really stresses is that it’s really important that clinicians allow people with M.E. to set the pace.

That would be pacing then, not graded anything.

We know that different people with M.E. have different needs, and applying the wrong approach at the wrong time, or moving too quickly, can be very unhelpful.

'Too much is bad for you.'

You don't say?

Useless #!%$*?@#*!! parasites.

 

[ukxmrv]

That and the 'satire' suggestion gave me an idea for some publicity that could catch on or even go viral if done well. It would be very 'British' in comedy style, which would of course be appropriate. Maybe on YouTube?

It would involve a mock competition to see who was the best liar out of the psychoquackery mob, complete with quiz-style sound effects when contestants did well. The winners and runners-up would acquire logos to illustrate their achievements, e.g. 2015 'Liar of the Year in Quackery category', 'Runner-up in 2015 Liar of the Year', etc. A good hacker could stick these logos on the quacky websites and other appropriate places.

There was this one earlier which (I think from memory featured "Creepy Crawley") but someone seems to have pulled the plug on it

 

[MeSci]

Clearly these wonderful practitioners also know that pwME are very stupid and could never work out for themselves how to pace, least of all with help from fellow-sufferers.

When did they stop advising us to ignore our symptoms and push on, or are they still fitting this in somewhere?

 

[MeSci]

There was this one earlier which (I think from memory featured "Creepy Crawley") but someone seems to have pulled the plug on it

I checked out the author's YouTube page and he has a few other videos, but there is an emphasis on XMRV. Good start though.

 

[A.B.]

Speaking of Wikipedia and Rituximab, there is no mention of the results or ongoing research on the CFS page on Wikipedia. Can't have people thinking this might be a real disease. I added a small note. Let's see how long it will last.

I managed to get the edit through. The article now mentions that Rituximab treatment is a thing.

 

[Jonathan Edwards]

@Jonathan Edwards - as a former doctor, do you know who is allowed to advise and train health professionals? Surely a group of psychiatrists/psychologists can't just come along and start doing that without NHS oversight?

You have to remember that surgeons were originally members of the Worshipful Company of Barber Surgeons or something like that. If you are good with a blade.... You would be amazed who is allowed to do what.

 

[jimells]

I actually took the trouble to download this ridiculous document over my dial-up internet connection. I am amazed at just how amateurish it is. There is no table of contents, index, bibliography, or references. If there is anything remotely scientific about this document, I fail to see it.

It's hard to call it a "treatment guide". It seems to be more of a "non-treatment guide". They could condense 33 pages down to about one page of "Don't try any of these treatments:".

As awful as it is, I doubt it will have much adverse effect on us, since (I'm guessing) few physicians will take the time and trouble to wade through it in a vain attempt to find something useful.

 

[jimells]

I managed to get the edit through. The article now mentions that Rituximab treatment is a thing.

(I wonder how long it will last...)

 

[cornwall13]

Interestingly, the wikipedia entry "Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells" didn't have a reference.

But if you google the phrase it seems to be taken from a book series, "Just the FACTS101 study guides", this phrase seems to be repeated a number of times through the books.

Surely the BACME should have referenced this because it's an almost direct quote? Apart from the word "primarily" between "ritiximab" & " destroy"

 

[Jonathan Edwards]

Interestingly, the wikipedia entry "Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells" didn't have a reference.

But if you google the phrase it seems to be taken from a book series, "Just the FACTS101 study guides", this phrase seems to be repeated a number of times through the books.

Surely the BACME should have referenced this because it's an almost direct quote? Apart from the word "primarily" between "ritiximab" & " destroy"

It might be a bit like referencing Paris is the capital of France though. Except that it is not a particularly good way of describing B cell abnormalities.

 

[Scarecrow]

Interestingly, the wikipedia entry "Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells" didn't have a reference.

But if you google the phrase it seems to be taken from a book series, "Just the FACTS101 study guides", this phrase seems to be repeated a number of times through the books.

It's far more likely that wiki is the source for the study guides. It's not at all uncommon to find whole articles lifted from wiki and dumped on websites. I was relieved when I worked this out because I was worried I might have had deja vu.

 

[sarah darwins]

I managed to get the edit through. The article now mentions that Rituximab treatment is a thing.

Well done!

Wiki is very ... Weird. I noticed the other day that Professor Lipkin's page makes no mention of me/cfs, though his profile at Columbia does. Conspiracy????

 

[A.B.]

It might be a bit like referencing Paris is the capital of France though. Except that it is not a particularly good way of describing B cell abnormalities.

Anyone can make edits on Wikipedia. Feel free to make improvements or point out problems to the editors.

 

[Jonathan Edwards]

Anyone can make edits on Wikipedia. Feel free to make improvements or point out problems to the editors.

Yes, I have amended that page before, but it is not worth worrying over the opening sentences. I have removed a reference to a trial at UCL because this can lead to enquiries that are not going to help anyone and can cause a lot of hassle for clinical colleagues. (Patients recruited will be from established documented cohorts.)

 

[MeSci]

You have to remember that surgeons were originally members of the Worshipful Company of Barber Surgeons or something like that. If you are good with a blade.... You would be amazed who is allowed to do what.

So it appears that a group of psychiatrists have been allowed to:

• claim a physical illness as their territory
• develop a theory about the illness
• develop a 'treatment' for the illnesses
• get government funding to carry out a trial
• spin the results
• withhold vital data
• persuade the regulatory body (NICE) to recommend their treatment
• use the fact that it is approved and recommended by NICE to promote the treatment at every opportunity
• form a training organisation to implement their approach
  
• persuade the NHS to hand over ME/CFS training to them (the psychiatrists)
• make sure that GPs (PCPs) only use their approach and (lack of) testing
  
• put their psychoquacks in charge of providing 'specialist treatment'.

It's pretty much a full circle.

 

[Dolphin]

Mary-Jane Willows, chief executive of the Association of Young People with
ME who has worked closely with Bacme at their training days and conferences
in Milton Keynes, commented: "All too often the experiences we hear from our
young members and their families are those of being passed from one medical
professional to another with very little understanding of what CFS/ME is and
what it involves.

"Sadly, the result is often the condition worsening before the patient
receives the treatment they so desperately need, in some cases ruling out
recovery completely. But CFS/ME is a treatable condition, and we welcome
these guidelines from BACME to provide much-needed practical guidance to all
professionals responsible for the care of those in need."

-----
Given AYME support the NICE guidelines, she presumably means CBT and GET

From: Specialist NHS professionals launch new therapy and management guide
for CFS/ME | 4 August 2015

http://www.meassociation.org.uk/201...and-management-guide-for-cfsme-4-august-2015/

 

[Bob]

It's not very interesting but the Chartered Society of Physiotherapy has briefly highlighted the BACME guide:
http://www.csp.org.uk/news/2015/08/12/physios-share-expertise-guide-therapy-me

 

[Dolphin]

Russell Fleming has posted his review of the guide today:
https://drive.google.com/file/d/0B-NT-7M70iguRlhXZUp1ZXo1NTg/view

He said he submitted it to the authors in August.
See this tweet https://twitter.com/Firestormmer/status/646285055451639808 and subsequent tweets from him.
(I haven't read either the full guide or Russell's review).

 

[Esther12]

The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website.

I just saw that @Action for M.E. directs people to the BACME website on their guide for management, which they've been encouraging people to direct their doctors to: https://www.actionforme.org.uk/health-and-care-professionals/primary-care/treatment-and-management/