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

[worldbackwards]

Rather than trying to tease the information out of me (I may not be in the mood to play ), it might be better to put your own cards on the table and then ask me to comment.

So at the risk of guessing incorrectly, I assume you're alluding to their involvement with the PACE trial and the stance they've taken in response to the conclusions, which contrasts pretty sharply with that of MEA. In that respect, if that is what you mean, I can't disagree with you.

However, it doesn't alter the fact that they are two different organisations.

The problem with a complex situation like this is that the well informed may think that others are making some obscure political point when, in fact, they are simply revelling in their ignorance. I vaguely remember hearing that AYME were AfME's "sister" organisation and that the one grew out of the other, that they were, as I said, 'much of a muchness'. Apparently I'm wrong - it isn't the first time. As you can see, I have no cards and I didn't know what the table was.

This reminds me of a chess game I once witnessed between two friends. Player A put his Queen into harm's way. Player B spent ten minutes trying to figure out what this Queen sacrifice could mean and what attack would be unleashed upon him if he took up the challenge. Whereas in fact Player A simply wasn't very good at chess.

 

[Sasha]

As you can see, I have no cards and I didn't know what the table was.

A few weeks ago I was an inadvertent bull in a china shop I hadn't realised was there.

I think this kind of thing is probably happening to many of us, and quite often.

 

[Scarecrow]

The problem with a complex situation like this is that the well informed may think that others are making some obscure political point when, in fact, they are simply revelling in their ignorance.

you give me far too much credit, I promise you.

Bob got it right and I got it wrong!

 

[Jonathan Edwards]

@Jonathan Edwards
Is there any grain of accuracy in this quote in the BAMCE report? I thought there was a delay generally in auto immune conditons?

I think Sidereal said it. Whoever wrote this has no idea what they are talking about. Maybe they saw the critical comment on PlosOne in 2011. But if they did they should have seen my reply. They have obviously never used rituximab.

 

[Sasha]

I think Sidereal said it. Whoever wrote this has no idea what they are talking about. Maybe they saw the critical comment on PlosOne in 2011. But if they did they should have seen my reply. They have obviously never used rituximab.

If they're about to disseminate this, should this be corrected?

@charles shepherd?

Also wondering what can be done with the MEA report in this context.

 

[Jonathan Edwards]

If they're about to disseminate this, should this be corrected?

@charles shepherd?

Also wondering what can be done with the MEA report in this context.

I was not aware of the exist of BACME prior to this thread. I am not sure what that implies!

The statement about all other autoimmune diseases really is an awful howler and if there is a way of politely pointing this out to the people who wrote it it might be a good idea. I haven't quite worked out how anyone can be so dumb as to say something so ill informed to be honest.

 

[Sasha]

I was not aware of the exist of BACME prior to this thread. I am not sure what that implies!

The statement about all other autoimmune diseases really is an awful howler and if there is a way of politely pointing this out to the people who wrote it it might be a good idea. I haven't quite worked out how anyone can be so dumb as to say something so ill informed to be honest.

I had thought that they had only set up a year or so ago with a BPS-oriented membership that didn't inspire confidence, but they've existed since 2009, according to their website.

I'm also surprised that this is the first we really seem to have heard of them - or have I just not been paying attention?

 

[Wildcat]

.
BACME has been in existence for many years, Dr Esther Crawley used to be the Chair, I don't know if she still is.
.

 

[MeSci]

Some things of note from the BACME document:

BACME is a voluntary organisation

(page 3).

BACME was formed in October 2009 following the merger of the CFS/ME Therapists Network and the Clinical Network Co-coordinating Centers National Collaborative.

(page 3) (Bear in mind that the only approved therapy was/is...I think you know by now.)

Objectives include

To champion evidence-based approaches to the treatment of CFS/ME, such as those recommended in the NICE guidelines

(page 3)

We felt that it was helpful to distinguish Interdisciplinary working from generic work, each member aware of core skills from own profession and additional skills from CFS/ME therapy training and experience. Members of team can include: physiotherapist; psychologist; occupational therapist; medic; nurse; dietician; counsellor.

(page 30) Thinks - what exactly is a 'medic'? A paramedic? A GP? I know we use 'medic' as a shorthand, but in a document like this they should be using proper terms. And where are the endocrinologists, immunologists, gastroenterologists, neurologists...but we don't want to bother those important folks with this trivial 'disease', do we?

They recommend

Keeping up to date with developments in the field (such as BACME).

(page 31)

Action for ME has useful resources see:
http://www.actionforme.org.uk/get-informed/employment

(page 31)

They have got the name of their supporters wrong: Action for Young people with ME (page 2). It is the Association of Young People with ME.

(BTW young people with ME might be better off with the Tymes Trust.)

 

[Sasha]

I see there's a conference to look forward to in October next year.

http://www.bacme.info/events/

 

[MeSci]

I had thought that they had only set up a year or so ago with a BPS-oriented membership that didn't inspire confidence, but they've existed since 2009, according to their website.

I'm also surprised that this is the first we really seem to have heard of them - or have I just not been paying attention?

Do a search of PR for 'BACME' - you may be surprised!

 

[user9876]

I was not aware of the exist of BACME prior to this thread. I am not sure what that implies!

The statement about all other autoimmune diseases really is an awful howler and if there is a way of politely pointing this out to the people who wrote it it might be a good idea. I haven't quite worked out how anyone can be so dumb as to say something so ill informed to be honest.

I hadn't read the whole Rituximab thing but they are also misrepresenting the on going work

A further open label study is being conducted in Norway, and funding is being sought to conduct an open label study in the UK. Some believe that the appropriate study would be a RCT and at present rituximab cannot be recommended

The document appears to be written or edited by Fiona Wright (according to the tags in the PDF file) and using google to join dots (which may not be reliable) she was an occupational therapist involved in the PACE trial.

 

[Sasha]

Do a search of PR for 'BACME' - you may be surprised!

I thought you meant I'd find I'd written an article about them and forgotten it!

But considering how long they've been around, it's amazing that we only have 8 threads on them (about one a year):

http://forums.phoenixrising.me/index.php?search/22503318/&q=bacme&o=date&c[title_only]=1

 

[Sasha]

A further open label study is being conducted in Norway, and funding is being sought to conduct an open label study in the UK. Some believe that the appropriate study would be a RCT and at present rituximab cannot be recommended

This is very poor indeed.

 

[MeSci]

I tried to find who the members were, but it's a 'restricted area'.

 

[MeSci]

Just realised that the organisation's name is spelt wrong in this thread. Can anyone correct it? Might be hard to find otherwise if people are looking for info about them.

 

[worldbackwards]

Just realised that the organisation's name is spelt wrong in this thread. Can anyone correct it? Might be hard to find otherwise if people are looking for info about them.

Done. I copied it off the thing I saw about it on Twitter, so blame whoever that was!

 

[A.B.]

There is a previous post about BACME:

http://forums.phoenixrising.me/inde...-mar-2015-trudie-chalder-giving-a-talk.35807/

From the BACME website:

The PACE Trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective therapies and should be widely available for patients with CFS/ME as per the NICE guidelines (www.nice.org.uk).

It's the usual self serving crap by the same people pretending to be acting in the interest of patients.

No wonder the document had to criticize the Rituximab research. They see it as competition stepping on their turf.

 

[Jonathan Edwards]

I hadn't read the whole Rituximab thing but they are also misrepresenting the on going work

A further open label study is being conducted in Norway, and funding is being sought to conduct an open label study in the UK. Some believe that the appropriate study would be a RCT and at present rituximab cannot be recommended

The document appears to be written or edited by Fiona Wright (according to the tags in the PDF file) and using google to join dots (which may not be reliable) she was an occupational therapist involved in the PACE trial.

It would be hard to get it more wrong really, wouldn't it.

 

[cornwall13]

Interesting the sentence in the BACME document:
"Rituximab primarily 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, including auto-immune conditions."

This sentence is remarkingly similar to the wikipedia page on Rituximab

"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. This includes many lymphomas,leukemias, transplant rejection, and autoimmune disorders."