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

[Scarecrow]

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.

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."

Busted.

 

[Jonathan Edwards]

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."

And there's nothing 'primarily' about it. It destroys B cells.

 

[A.B.]

And there's nothing 'primarily' about it. It destroys B cells.

Aren't there any other cells which express CD20?

 

[Jonathan Edwards]

Aren't there any other cells which express CD20?

Basically no. A few T cells show up in the CD20+ gate but nobody has much idea why.

 

[Sidereal]

Copying wikipedia LOL. Caught with their pants down on this big bad forum.

 

[jimells]

CBT crowd floated this claim in the comments section to the Fluge/Mella 2011 PLoS paper. Dr Edwards smacked it down:

Go Team Go!!

 

[SOC]

The PACE Trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported.

I'd love to know who wrote that. Let me guess... one of the researchers associated with the PACE trial who has no problem with shameless bragging (read: flat-out lying).

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."

Wow, loads and loads of honesty and integrity going on in this "Clinical Guide", as well as adherence the highest standards of writing and research.

They should be ashamed of themselves.

 

[Sean]

So, a satirical document then?

 

[worldbackwards]

So, a satirical document then?

If it's a joke, then it's us who's the punchline.

 

[Sean]

If it's a joke, then it's us who's the punchline.

For now.

 

[MeSci]

Been looking for info about members, etc., and found this from 2010:

http://www.meassociation.org.uk/201...ing-role-of-new-body-for-mecfs-professionals/

"BACME, chaired by consultant paediatrician Dr Esther Crawley, appears to have assumed the functions of what used to be called the CFS/ME Clinical and Research Network and Collaborative (CCRNC) but there is little information available about this change in the public domain."

"Why is WMMEG (West Midlands ME Groups Consortium) concerned?

They think that BACME, which has apparently taken over as the training forum for NHS staff involved in the care of people with ME/CFS, needs to be more publicly accountable, would benefit from wider patient participation and is too much under the influence of the psychiatric lobby."

"Members of the BACME will be represented by an executive committee which will comprise one representative nominated from each CNCC, eight elected individual members, two to four patient/carer members, and one observer/member from each of a maximum of four National UK CFS/ME organisations which support the objectives of the BACME."

"Who monitors BACME and the NHS Services for CFS/ME?

Not only is BACME not monitored by the Department of Health, but neither are the NHS services for CFS/ME – although the NHS logo was prominently displayed in the BACME 2007 & 2009 conference documentation). Lord Darzi (Department of Health) confirmed that an assessment (of NHS services for CFS/ME) has not been made."

This document from March 2010:

says:

"Since the last APPG on ME meeting, the “CCRNC Inaugural Research Workshop” was held at St Barts Hospital, London on 7 December. Speakers here included - Professor Peter White, Professor Simon Wessely, Professor Trudie Chalder and two representatives from BACME."

This blogpost from July 25, 2010:

says "Invest in ME has issued a statement around its decision to decline an invitation to become a member of BACME (British Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).

For Invest in ME’s position statement on the proposed Bath/Bristol pilot study to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process and specialist medical care in CFS/ME in children as young as eight, go here."

Kings College London CFS Unit

has prominent links to BACME and AYME

Don't expect anything good from this group, and be surprised if you find anything good about them.

 

[MeSci]

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

@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?

 

[MeSci]

Copying wikipedia LOL. Caught with their pants down on this big bad forum.

Could they not have written (some of) the Wikipedia page? I'm sure they would have tried.

My brain has been really playing up - I thought I had edited this but had replied to it instead.

Ignore this message - it's rubbish!

 

[MeSci]

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

Maybe, but there are 8 pages of hits if you don't tick the 'search titles only' box.

 

[Sidereal]

Could they not have written (some of) the Wikipedia page? I'm sure they would have tried.

I highly doubt they wrote the wikipedia page on rituximab.

 

[nasim marie jafry]

There is a previous post about BACME:

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

From the BACME website:

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.

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.

 

[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.

 

[Wildcat]

.
Both Action for ME (AFME) and the Sussex ME Society (so called patient group and charity with long standing links to Peter White and Barts) have quickly endorsed the latest BACME Guide.


Hazel O’Dowd s a Clinical Psychologist was “involved” in the production of the BACME Guide, who was also on the PACE Trial Management Group, and is/was ‘Clinical Champion for CFS/ME services Avon, Somerset, Wiltshire and Gloucestershire’



AFME CEO blog: Dr Hazel O’Dowd on BACME
4 August 2015
http://www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-dr-hazel-odowd-on-bacme

‘The British Association for CFS/M.E. (BAMCE) launches its new clinical guide to practical management of M.E. for healthcare professionals today. Our CEO Sonya Chowdhury invites Bristol NHS M.E. Service clinical lead Dr Hazel O’Dowd, who was involved in its production, to explain how the guide came about…..’


~~~~~~~~~~~~~~~~~~~~



2011

Hazel O’Dowd

Frenchay Hospital, Bristol, to lead £250,000 study into the effects of early intervention in CFS

News release issued by the North Bristol NHS Trust, 13 December 2011

https://www.nbt.nhs.uk/news-media/latest-news/frenchay-lead-£250000-study-effects-early-intervention-me

The UK’s biggest research study into whether early intervention could lessen the effects of chronic fatigue syndrome is due to get underway at North Bristol NHS Trust in spring 2012.

Frenchay Hospital is one of only 40 specialist NHS centres in the UK for people with chronic fatigue, also known as ME.

The multi-disciplinary team which includes occupational therapists, physiotherapists and clinical psychologists has been at the forefront of developing techniques around changes in behaviour and using exercise to help patients beat the debilitating illness.

Dr Hazel O’Dowd, the clinical psychologist who runs the centre, said: “People with chronic fatigue feel incredibly isolated. The illness can have a dramatic and long-term effect on their life.

“Since setting up in 2003, we have worked with hundreds of patients to improve their lives. We have particularly focused on cognitive behaviour therapy and graded exercise.

“For example, people with ME have good days and bad. On the good days it is tempting for them to push themselves and then for subsequent days they are so exhausted they can’t do anything at all.

“We teach them to pace themselves, just do a little, building up stamina, changing the way they see themselves.”



~~~~~~~~~~~~~~~~





2012

(Excerpts)

Avon Education Handout CFS/ME 2012/neurology
http://www.avongpeducation.co.uk/handouts/2012/neurology/CFSME.pdf


Dr Hazel O’Dowd Clinical Champion for CFS/ME services Avon, Somerset, Wiltshire and Gloucestershire

CFS/ME

How big is the problem?

1/10 GP appointments are about fatigue
2% fatigue persists for 4 months, is disablingand associated with other symptoms
(3,5,8)


What is it?

Lots of controversy

Lots of diagnostic criteria

Many different study designs

One condition or many

One end of a spectrum of normality

Controversy re causation

Stigma of association with mental health



NICE

“...best regarded as a spectrum of illness that is triggered by a variety of factors in people who have an underlying predisposition”


Suicide not increased

Among 2075 people followed up in 19 published studies of the outcome of prolonged fatigue and CFS, there was one death by suicide and two unrelated deaths. These studies included mean follow up periods ranging from six months to four years, suggesting that suicide rates and overall mortality are not increased in people with CFS.

Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review.

QJM 1997; 90: 223- 233




What causes CFS/ME?

Infection (XMRV)

Mitochondrial malfunction

Primary sleep disorders/other conditions

Cognitive/Intereoception

Central system sensitivity



Prognosis

Without treatment poor >10%

With treatment (PACE trial)

Children and adolescents



Treatment

Offer a person - centred programme that aims to:

sustain or extend the physical, emotional and cognitive capacity

manage the physical and emotional impact of symptoms

Symptomatic relief

Offer cognitive behavioural therapy and/or graded therapy for mild or moderate CFS/ME




Exercise

Don’t Mention The War

BASELINES

Calculating what is safe (Average of 3 sessions/50%)

Increasing Activity

SPECIALIST SUPERVISION



Self help

Afme.org.uk

‘Overcoming fatigue’ Mary Burgess and Trudy Chalder

‘Coping with chronic fatigue’ Trudy Chalder

Local EPP




PACE Trial

Is PACING as effective as CBT and GET

Are these treatments safe?

Are they acceptable to patients?

Are they effective for any diagnostic criteria?

White et al 2011 Lancet 377, 823-836

 

[MeSci]

Could they not have written (some of) the Wikipedia page? I'm sure they would have tried.

Sorry - brain malfunction - daft suggestion. I had got confused!

 

[Scarecrow]

AFME CEO blog: Dr Hazel O’Dowd on BACME
4 August 2015
http://www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-dr-hazel-odowd-on-bacme

‘The British Association for CFS/M.E. (BAMCE) launches its new clinical guide to practical management of M.E. for healthcare professionals today. Our CEO Sonya Chowdhury invites Bristol NHS M.E. Service clinical lead Dr Hazel O’Dowd, who was involved in its production, to explain how the guide came about…..’

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

For instance, we know that those with severe M.E. need different support. So BACME is working on separate guidance for treating who are severely affected by the condition, and another for working with children who have M.E.

Cripes.