BACME website

Sasha

Sasha

Senior Member (Voting Rights)
BACME's (British Association for CFS/ME) website has been down for ages, I'd thought, but now it's up again, and it's quite strange. Here it is: https://www.bacme.info/

The first weirdness is its huge, colourful main-page banner of lively, fully able people and mostly children jumping and playing in a park.

This is their idea of patients? Are they nuts?

There are other oddities, but here's another on their page of patient support-groups: https://www.bacme.info/patient-support-groups

The full list of groups is this:

The Association of Young People with ME (AYME) has now merged with Action for M.E.
The Sussex & Kent ME/CFS Society is a major regional charity which aims to inform, support, and represent people affected by CFS/ME in the South East of England.
reMEmber was formed in 1999 to secure good medical services for people who have CFS/ME.
So it's AYME, which no longer exists; AfME, the only ME/CFS UK charity, apart from AYME, not to come out clearly against PACE; a single local group, whose advisors include Esther Crawley; and reMEmber, who I don't know anything about.

No ME Association, which is extraordinary. Are you aware of this, @Russell Fleming?
 
http://forums.phoenixrising.me/inde...e-anyone-know-anything.965/page-2#post-790107


"
Dr Gabrielle Murphy has been appointed chair of the British Association for CFS/ME (BACME) at their October AGM.

Dr Murphy who is a Medical Advisor to the Sussex & Kent ME/CFS Society is a specialist physician working in the Department of Immunity and Inflammation at the Royal Free Hospital in London. She is Clinical Lead of the Fatigue Service at The Royal Free Hampstead NHS Trust, and also works part-time in HIV medicine. She began working in fatigue with Professor Tony Pinching at St Bartholomew’s Hospital in 2000 and then moved to the Royal Free to re-open the service there.

Gabrielle takes over the chairmanship from Dr Alastair Millar who is also a Medical Advisor to Sussex & Kent that serves as a membership organisation on the BACME executive."
2016
http://measussex.org.uk/bacme-chair-november/


"Professor Esther Crawley, Dr Neil Harrison, Dr Gabrielle Murphy, Dr Alastair Miller"
http://measussex.org.uk/about-us/medical-advisors/

eta:
Arnie Pye said:
This link from the front page is horrifying : https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf
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this has been around for a few years and a number of the links within the document no longer work
 
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"Once a diagnosis has been made, patients should be considered for further evaluation to see if they would benefit from the evidence based treatments (CBT – cognitive behaviour therapy and GET – graded exercise therapy)." (page 4, bold mine)

Yeah, we know about that evidence base...

"Therefore in addition to referral for definitive therapy (CBT and GET type interventions) patients with CFS/ME may need symptomatic remedies to help with specific symptoms whilst waiting for definitive therapy to become available and/or to become effective." (page 6, bold mine)

I'll stop reading any further now. :wtf:
 
Sasha said:
The first weirdness is its huge, colourful main-page banner of lively, fully able people and mostly children jumping and playing in a park.

This is their idea of patients? Are they nuts?
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This is the first thing that struck me too @Sasha
Talk about rubbing it in!

Absolutely everything that any adult or child with ME cannot do - running, jumping, swinging, climbing, gymnastics, lifting a child in the air.

It feels inappropriate and quite insulting to me.
 
Wouldn’t have expected anything else from this organisation it is for people involved in delivering the NHS approach ie PACE. Anything else that anyone gets from the NHS is basically through their medical professionals stretching the boundaries.

ETA. I don’t think there’s much mileage in suggesting changes to improve their site it will take changes to NICE guidelines to achieve any overhaul.
 
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Sasha said:
No ME Association, which is extraordinary. Are you aware of this, @Russell Fleming?
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My thoughts about BACME were that the ME Association should join to see what was happening and try to influence from within. It's quite a 'closed shop' by all accounts. When I last raised this with our trustees I was told that apparently they had tried to join but had been denied membership. Apparently, they wouldn't welcome a national charity as outspoken as we were (I'm paraphrasing).

I did recently enquire - not directly I admit - if BACME could provide the ME Association with an authoritative listing of all NHS specialist services in the country, but was told they don't have that information, which I found incredibly strange.

I've always wanted to know what relationship BACME had with the national outcomes database (NOD). I don't think it's active anymore and perhaps hasn't been for some time, but the original idea of collecting patient data from specialist services and feeding it back to a central database seemed worthwhile at the time.

Specialist services collect a large amount of data - and while much of it could be criticised - with the proper revisions, and new measures recorded, something like NOD could be a very useful tool in feeding back not only clinical data, but also on the effectiveness of NHS 'treatments'. If done properly it would have helped in the negotiations we will be having with NICE for example - though a large part of me feels such data would be need to be independently sought and collated else it become skewed.

I think the 'colour' added to BACME was in part to do with the conference. It seemed the website suddenly became active again once they were recruiting for attendees. But I could be wrong.
 
From what I gather, you have to unequivocally accept the 'evidence-based' treatment regime, as they call it, meaning GET and CBT. If you question it, as any right-thinking person would, you can't be permitted to join.

I wonder how they'll all cope when NICE gets rid of these recommendations! Perhaps they'll implode.
 
Russell Fleming said:
My thoughts about BACME were that the ME Association should join to see what was happening and try to influence from within. It's quite a 'closed shop' by all accounts. When I last raised this with our trustees I was told that apparently they had tried to join but had been denied membership. Apparently, they wouldn't welcome a national charity as outspoken as we were (I'm paraphrasing).
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Interesting. It would be good to have that response made public, if the MEA deems that appropriate. It's not good for an organisation such as BACME to be allowed to hide any strangeness behind closed doors. These are members of the NHS and, as such, they work for us.

RF said:
I did recently enquire - not directly I admit - if BACME could provide the ME Association with an authoritative listing of all NHS specialist services in the country, but was told they don't have that information, which I found incredibly strange.
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I agree.
 
adambeyoncelowe said:
From what I gather, you have to unequivocally accept the 'evidence-based' treatment regime, as they call it, meaning GET and CBT. If you question it, as any right-thinking person would, you can't be permitted to join.
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How do you gather that?

I realise I'm challenging people's statements on the forums sometimes and I hope I don't seem rude. But I think it's important that we're clear on what are facts about an organisation such as BACME that are supported by evidence, and what is supposition. If someone has tried to join BACME and has received a letter saying they can't because they don't accept CBT or GET, we need to know about it. But if that's not true, we need not to state that as opinion rather than fact.

Sorry to be a bit hard-line on this, but I think it's important.
 
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@Russell Fleming spot on what is the point of BACME if they can’t even provide a list of services. I guess it could be somewhat challenging for them as the so called specialist clinics -?where they actually existed - are being decommissioned and subsumed into MUS and doing a list would make that visible and that specialist CFS clinics are dinosaurs
 
Russell Fleming said:
I did recently enquire - not directly I admit - if BACME could provide the ME Association with an authoritative listing of all NHS specialist services in the country, but was told they don't have that information, which I found incredibly strange.
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Well, they do say this on their website
Find a specialist CFS/ME service
Please bear with us while we research and update our specialist services map. Please contact info@bacme.info if you would like to be included in our services map.
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Link to the map - https://www.bacme.info/specialist-services

But I would agree that it is very strange that they don't maintain this list as a standard.
 
Esther12 said:
I remember them having something on their website about membership being for those who support 'evidence-based' interventions - it no longer seems to be there.
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This. The term 'evidence based' was a direct quote from their website. I couldn't remember the exact spiel, but I remember that key wording. There was also some guff about 'harassment', and how you couldn't engage in it and had to disavow it.

Of course, the website has now changed, making it hard to link to anything. Will they wholly support the removal of GET and CBT now it's no longer 'evidence-based', I wonder?
 
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