United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

rvallee said:
Can anyone attend and just tell them to close their useless organization?
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Though I understand your position @rvallee, and agree that on the basis of current evidence abolishing the UK specialist services and providing nothing in their place might result in improved patient outcomes, that is not going to happen.

Consequently this group is going to need to be part of any change. I think they are not as lost as the high profile consultants and psychiatrists using the Royal Colleges to attempt to reverse the ‘new’ NICE guidelines. This group as a whole are trying to work within the guidelines and are coming to understand that GET and curative CBT are unhelpful, but remain at risk of replacing GET/CBT with ‘pacing up’ as a rehabilitation technique rather than seeing pacing just as a management strategy.

If this group could be got to evaluate heart rate monitoring, strategies for managing OI, sensory hypersensitivities, dietary intolerances, use of mobility aids, pacing involving activity reduction, etc, support benefits applications and obtaining practical help for daily living activities, despite their disappearance down the central sensitisation rabbit hole, they could move towards being a helpful clinical resource providing useful information for patients and for other clinicians.

On the whole this group are not as ego driven as such as the Whites, the Wesseleys and the Crawleys and with the right direction would listen to their patients.
 
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Peter Trewhitt said:
Though I understand your position @rvallee, and agree that on the basis of current evidence abolishing the UK specialist services and providing nothing in their place might result in improved patient outcomes, that is not going to happen.

Consequently this group is going to need to be part of any change. I think they are not as lost as the high profile consultants and psychiatrists using the Royal Colleges to attempt to reverse the ‘new’ NICE guidelines. This group as a whole are trying to work within the guidelines and are coming to understand that GET and curative CBT are unhelpful, but remain at risk of replacing GET/CBT with ‘pacing up’ as a rehabilitation technique rather than seeing pacing just as a management strategy.

If this group could be got to evaluate heart rate monitoring, strategies for managing OI, sensory hypersensitivities, dietary intolerances, use of mobility aids, pacing involving activity reduction, etc, support benefits applications and obtaining practical help for daily living activities, despite their disappearance down the central sensitisation rabbit hole, they could move towards being a helpful clinical resource providing useful information for patients and for other clinicians.

On the whole this group are not as ego driven as such as the Whites, the Wesseleys and the Crawleys and with the right direction would listen to their patients.
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Exactly Peter. We've already seen a stated shift in approach from them, which obviously we will need to monitor as best we can, this group has the potential to be a very useful one to pwME in the UK if they can be encouraged onto the right path. Thankfully more helpful engagement is happening than simply wishing that they would go away.
 
From an email this morning:


BACME 2023 National Services Survey launched
BACME have recently launched our 2023 National Services Survey. We hold a database of NHS specialist ME/CFS services, the majority of whom are featured on the BACME services map, and they have all been sent an invitation to complete our comprehensive survey looking at all aspects of service provision. The questions cover the size and structure of services, what age groups and severity of illness they cater for, what geographical area they cover and what staffing they have. There are also questions focusing on diagnosis and therapy approaches, education and research involvement.

In 2018 BACME undertook a snapshot audit of NHS ME/CFS services with the aim of quantifying what the provision of care is across the UK. The results of the survey demonstrated huge variation in the size and structure of services and also highlighted the gaps in geographical coverage particularly for children and young people and for people who are severely and very severely affected by ME/CFS.
The 2018 Survey report is available on our website or from this link:
BACME 2018 National Services Survey

When the Department of Health and Social Care (DHSC) began their work on producing a delivery plan for ME/CFS in 2022 they used the 2018 BACME survey as a starting point to understand what is currently being provided. In the time since our last survey was conducted a lot of changes have happened including the publication of a new NICE guideline for ME/CFS and a complete restructuring of NHS commissioning with the formation of Integrated Care Boards. We have also journeyed through a global pandemic caused by an infection which has triggered long-term illness for large numbers of people. It is therefore a relevant time for us to repeat this snapshot audit to identify what changes have occurred, to find examples of good practice that we can promote and replicate and also to identify what issues still require further effort to improve.

The survey design was developed with support from the DHSC delivery plan team and their data analysts and we have also sought feedback from several of the large ME/CFS patient charities to help further our collaborative working.

The results of the survey will be shared with the DHSC and the All Party Parliamentary Group for ME so we are hopeful we can collectively contribute to the efforts being made by many groups to promote the need for increased provision of specialist ME/CFS care.

If you are aware of an NHS specialist ME/CFS service that is not featured on the BACME map please contact us at info@bacme.info with any contact details you have for the service so we can get in touch with them.


Thank you


Kind Regards

Anna Gregorowski
BACME Chair
 
Sought feedback from several of the large patient charities- did I miss something? I wouldn’t call AFME or MEAssociation large charities. And the other charities are definitely not large.

plus they should be seeking information from every Board across the country so they can show where there’s no provision
 
NelliePledge said:
Sought feedback from several of the large patient charities- did I miss something? I wouldn’t call AFME or MEAssociation large charities. And the other charities are definitely not large.

plus they should be seeking information from every Board across the country so they can show where there’s no provision
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Agree that going with ‘large charities’ is what you’d state as a ‘political answer’ (small ‘p’) focus to tick box. Whereas methodologically thinking ‘who/what does need to be represented as angle’ whatever their size or resource because it’s about representation but also those most qualified to input is different

local groups strike me as one obvious thing (given ME Association noted they’d need them to be the ones keeping an eye on the local ones) - they’ll know from their examples what q is needed to pick up on specific types of funny behaviour or lack of clarity they see. And I think that bottom-up, on the ground, of examples first and making sure it covers and picks those up is ‘the task’ if it’s about bad and good practice.

(qualified referring to a term used in surveys and market research of ‘is this question one that these people are qualified to answer’ and probably needs to be thought of in terms of whether ‘it’s hearsay’ but/and have you worded it as something people actually will know or will they have to give a ‘best fit’ answer because it’s a funny question that doesn’t fully make sense how they’d know that)


I know this is just a short statement and maybe there is more detail on the how eg on a website or fuller document? To me the getting a few hand picked patients to give it a nod and spot any where you might change minor wording at the end after decisions made doesn’t cut the mustard as an excusable equivalent from which one could infer ‘involved in design’ so I’d expect someone is insisting there is more and it is enforced that it now is just the norm that these questions of checking/asking/insisting if that detail of involvement is up to scratch before sign-off is given any time such things are done. I know from it being a standard expectation of any work for so many years for all it ‘seems’ more work but that’s only if you frame it as easiest way to tick box (because shortcuts or nothing have been the default etc) instead of who and how do we need to involve at design stage then see it as your own problem to make doing that complete doing the job properly as efficient as possible.

a survey of clinics and staff is only any good if the questions have come from patient insight otherwise they are just asking themselves questions based on what they do or don’t want to flag and missing the point on what are you measuring. Given their history of ‘satisfaction survey’ quality to proxy effectiveness of treatment the input of this skill and knowledge they don’t have at the start to write the overall research questions then keep the questions to task by branching them from that needs that normal step not to be skipped?

I’d be intrigued as to the boundaries of ‘remit’ any designer might have been given as to what can ir can’t be asked or focused on. Given the 1yr on from new guidelines and still some ignoring it or doing their own preference when this the time to make that unacceptable going forward as they’ve had their time to do it right way on their own there will of course need to be a big focus on ‘emphasis’ ie big picture. So good or bad practice the overall aim angle and staff ideology to patients comes first to supposed ‘frills’ that could be distractions from missing or wrongly angled basics.

I hope the ‘right criteria ergo patients with PEM abd treatment that is designed around not harming’ to directly ask those who ‘only service those without PEM ie not ME/CFS’ is almost the first question. And questions direct and clear enough that if they answer don’t service ME/CFS and won’t in future (with a plan of how that change will really take place) that’s what shines through in their categorisation whatever ‘flavour of extras or spiel or intentions’. People who choose to put all funding on mindfulness or CBT over clinically useful things that need to be offered being right need to not inadvertently get given ‘best practice’ awards for something that isn’t what needs to be rolled out as an ‘easy to/rather do’ over the essentials needing to be delivered to standard from any funding. And yes the how and the detail of everything is needed because most things offered could either harm ir help depending on this twist.
 
Peter Trewhitt said:
Though I understand your position @rvallee, and agree that on the basis of current evidence abolishing the UK specialist services and providing nothing in their place might result in improved patient outcomes, that is not going to happen.

Consequently this group is going to need to be part of any change. I think they are not as lost as the high profile consultants and psychiatrists using the Royal Colleges to attempt to reverse the ‘new’ NICE guidelines. This group as a whole are trying to work within the guidelines and are coming to understand that GET and curative CBT are unhelpful, but remain at risk of replacing GET/CBT with ‘pacing up’ as a rehabilitation technique rather than seeing pacing just as a management strategy.

If this group could be got to evaluate heart rate monitoring, strategies for managing OI, sensory hypersensitivities, dietary intolerances, use of mobility aids, pacing involving activity reduction, etc, support benefits applications and obtaining practical help for daily living activities, despite their disappearance down the central sensitisation rabbit hole, they could move towards being a helpful clinical resource providing useful information for patients and for other clinicians.

On the whole this group are not as ego driven as such as the Whites, the Wesseleys and the Crawleys and with the right direction would listen to their patients.
Click to expand...

(Outline of a basic set of Service Specification requirements in a nutshell....?)
I used Peter's ecellent opinion piece on BACME, to inform the general drift of our Service Specification draft for our ICS work.

If a Service...... could be got to;

evaluate heart rate monitoring, strategies for managing OI, sensory hypersensitivities, dietary intolerances,
use of mobility aids, pacing involving activity reduction, etc,

support benefits applications and obtaining practical help for daily living activities,

they could move towards being a helpful clinical resource providing useful information for patients and for other clinicians.

And would hopefully listen in partnership to.... and learn from their patients in a truely collaborately approach.....

Existing unmet needs and inequalities
As many Services currently only serve mild moderate ambulatory....

We need a designated section to cover the most needy and vulnerable,

* Severely Affected and CYP

The Consultant and MDT ongoing term care oversight and coordination especially in any acute/ red flag situation;
Service Spec should have a Severely Affected Contingency planning protocol to prevent harms)? ....Like for steroid patients, diabetics....

Access made for and advice given for acute their needs Mfor any specialist interventions in eg hospital / specialist treatments any where.
 
Don't know whether there is anything new here?

From: Dr. Marc-Alexander Fluks
Subject: BACME ME/CFS Management Guides


Source: British Association of Clinicians in ME/CFS (BACME)
Date: July 9, 2023
URL: https://bacme.info/library/management_guides/


Management Guides
-----------------

BACME provides information to support clinicians in their work with people with ME/CFS. These management guides and supporting documentation are posted in this section.

* BACME Care and Support Plan Guidance

https://bacme.info/wp-content/uploads/2022/12/BACME-Care-and-Support-Plan-Guidance-Dec22.pdf

* BACME ME/CFS Guide to Symptom Management

https://bacme.info/wp-content/uploads/2022/08/BACME-Guide-to-Symptom-Management-Sept2022.pdf

* BACME ME/CFS Guide to Therapy

https://bacme.info/wp-content/uploads/2022/08/BACME-ME_CFS-Guide-to-Therapy-2022.pdf

* BACME Post-Exertional Malaise

https://bacme.info/wp-content/uploads/2022/05/BACME-Post-Exertional-Malaise.pdf

* BACME Primary Care Guide to ME/CFS

https://bacme.info/wp-content/uploads/2022/12/BACME-Primary-Care-Guide-to-MECFS.pdf

* Post Viral Fatigue A Guide to Management

https://bacme.info/wp-content/uploa...ral-Fatigue-A-Guide-to-Management-May2020.pdf
 
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I've just read the PEM guide. It's hard to pin down what I find wrong with it, but it doesn't read right to me.

There are some good bits, but it's all based around the idea that PEM is a temporary extension or worsening of fatigue, with a mention of a few other symptoms. It's all too bland and blasé, making PEM sound like a bit of an inconvenience for a few hours or days.

And there's the inevitable suggestion that you find your baseline then start to feel better and can do more.

Spending a lot of time in bed is portrayed as a negative leading to deconditioning, and there's no mention of the possiblity of long term worsening, being in permanent rolling PEM, never being able to find your baseline, life demands preventing adequate rest, the difficulties of pacing and avoiding PEM, etc.

The NHS England ‘Your Covid Recovery’ online resource now includes a section on Post-Exertional Malaise. The following document was written in collaboration with the ‘Your Covid Recovery’ team and members of the BACME Board.
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I think maybe that's the problem. This is the creation of healthy people who only know PEM from the outside, and from reports from patients on the milder end of the spectrum who they see in clinics.
 
Andy said:
Exactly Peter. We've already seen a stated shift in approach from them, which obviously we will need to monitor as best we can, this group has the potential to be a very useful one to pwME in the UK if they can be encouraged onto the right path. Thankfully more helpful engagement is happening than simply wishing that they would go away.
Click to expand...

InitialConditions said:
From an email this morning:


BACME 2023 National Services Survey launched
BACME have recently launched our 2023 National Services Survey. We hold a database of NHS specialist ME/CFS services, the majority of whom are featured on the BACME services map, and they have all been sent an invitation to complete our comprehensive survey looking at all aspects of service provision. The questions cover the size and structure of services, what age groups and severity of illness they cater for, what geographical area they cover and what staffing they have. There are also questions focusing on diagnosis and therapy approaches, education and research involvement.

In 2018 BACME undertook a snapshot audit of NHS ME/CFS services with the aim of quantifying what the provision of care is across the UK. The results of the survey demonstrated huge variation in the size and structure of services and also highlighted the gaps in geographical coverage particularly for children and young people and for people who are severely and very severely affected by ME/CFS.
The 2018 Survey report is available on our website or from this link:
BACME 2018 National Services Survey

When the Department of Health and Social Care (DHSC) began their work on producing a delivery plan for ME/CFS in 2022 they used the 2018 BACME survey as a starting point to understand what is currently being provided. In the time since our last survey was conducted a lot of changes have happened including the publication of a new NICE guideline for ME/CFS and a complete restructuring of NHS commissioning with the formation of Integrated Care Boards. We have also journeyed through a global pandemic caused by an infection which has triggered long-term illness for large numbers of people. It is therefore a relevant time for us to repeat this snapshot audit to identify what changes have occurred, to find examples of good practice that we can promote and replicate and also to identify what issues still require further effort to improve.

The survey design was developed with support from the DHSC delivery plan team and their data analysts and we have also sought feedback from several of the large ME/CFS patient charities to help further our collaborative working.

The results of the survey will be shared with the DHSC and the All Party Parliamentary Group for ME so we are hopeful we can collectively contribute to the efforts being made by many groups to promote the need for increased provision of specialist ME/CFS care.

If you are aware of an NHS specialist ME/CFS service that is not featured on the BACME map please contact us at info@bacme.info with any contact details you have for the service so we can get in touch with them.


Thank you


Kind Regards

Anna Gregorowski
BACME Chair
Click to expand...

I approached BACME as a NICE Stakeholder for LocalME, and as someone involved with the DHSC Living with ME discussion.
I asked to join BACME as I had (I thought) a lot of experience in NHS Service development that would be pertinent at the coalface stuff!!
I am also with others in Suffolk, well up to speed on the new Health and Care Act 2022 and all that has ensued in the past year.

And last week, our 5 year Integrated Forward Plan was finally approved by NHS England and published.

https://healthwatchsuffolk.co.uk/news/five-year-plans-for-the-nhs-in-suffolk-published/

ME is a specified SNEEICB Priority Health Inequalities Workstream along with Cancer, Diabetes etc!
Chuffed to see it there we are! It has taken some doing!
So will BACME welcome me to join and inform them?
No they will not. They are not following the ICS model and ethic at all. I don't meet their 'criteria'.

I was singularly not impressed!
They are exclusionary!

Doing this survey is, in effect, them marking their own homework....
 
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Suffolkres said:
I was singularly not impressed!
They are exclusionary!
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Their criteria is
"Membership of BACME is open to UK-based healthcare professionals and researchers involved in the diagnosis and/or treatment of ME/CFS using clinically effective practice."

as shown here, https://bacme.info/join/

If you meet that criteria then you have grounds to be unimpressed, otherwise I don't see why they should make an exception for you.
 
Suffolkres said:
I approached BACME as a NICE Stakeholder for LocalME, and as someone involved with the DHSC Living with ME discussion.
I asked to join BACME as I had (I thought) a lot of experience in NHS Service development that would be pertinent at the coalface stuff!!
I am also with others in Suffolk, well up to speed on the new Health and Care Act 2022 and all that has ensued in the past year.

And last week, our 5 year Integrated Forward Plan was finally approved by NHS England and published.

https://healthwatchsuffolk.co.uk/news/five-year-plans-for-the-nhs-in-suffolk-published/

ME is a specified SNEEICB Priority Health Inequalities Workstream along with Cancer, Diabetes etc!
Chuffed to see it there we are! It has taken some doing!
So will BACME welcome me to join and inform them?
No they will not. They are not following the ICS model and ethic at all. I don't meet their 'criteria'.

I was singularly not impressed!
They are exclusionary!

Doing this survey is, in effect, them marking their own homework....
Click to expand...
 

Attachments

Trish said:
Given that it's basically a club for clinicians who work with ME patients, I wouldn't expect you to be able to join. However, perhaps you could offer to be a speaker at one of their meetings.
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Not entirely true.... as there are patients carers and local groups allowed on it! Selectively though.....

Our plan with ME written up and case studies. .....
Will identify pages relevant.

We are in 'Domain' Stay Well'....
. .If only we could!

https://suffolkandnortheastessex.ic...ICB-Joint-Forward-Plan-2023-2028-PROOF_20.pdf
 
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Andy said:
Their criteria is
"Membership of BACME is open to UK-based healthcare professionals and researchers involved in the diagnosis and/or treatment of ME/CFS using clinically effective practice."

as shown here, https://bacme.info/join/

If you meet that criteria then you have grounds to be unimpressed, otherwise I don't see why they should make an exception for you.
Click to expand...


I agree Andy, and I am seeking no favours, however, they do make exceptions for some..... and their 'criteria' is totally at odds with the spirit and requirements of Coproduction Partnership working ethos of the Sustainability and Transformation Plan System, started in 2016 and consolidated in the 2022 Health & Care Act.
Suffolk Commissioning have been coproducing for years.
 
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Suffolkres said:
I agree Andy, and I am seeking no favours, however, they do make exceptions for some..... and their 'criteria' is totally at odds with the spirit and requirements of Coproduction Partnership working ethos of the Sustainability and Transformation Plan sysem, started in 2016 and consolidated in the 2022 Health & Care Act.
Suffolk Commissioning have been coproducing for years.
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How does their membership criteria prevent them from potentially coproducing anything? That makes no sense to me, I'm not a member of the University of Edinburgh but I am part of the team that is coproducing DecodeME - you don't need to be in the same organisation to coproduce something.
 
Sussex ME/CFS Society (patient charity)

5th December 2022

ME/CFS EDUCATION FOR DOCTORS

Most of our medical advisors and ME/CFS specialist clinicians based in our region are members of the British Association of Clinicians in ME/CFS (BACME). The multidisciplinary organisation that provides information, resources, education and networking opportunities to UK professionals to deliver high quality care to people living with ME/CFS.

Their new website includes some excellent guidelines written by professionals for professionals that can be downloaded.

https://bacme.info/

https://measussex.org.uk/me-cfs-education-for-doctors-2/







30TH MAY 2023

GOOD PROGNOSIS POSSIBLE

'The Sussex & Kent ME/CFS Society that works for those affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome (CFS) recently asked nine specialist doctors about their opinions on prognosis.

The experts said younger people tend to have a better recovery rate, according to one third of the doctors. A third also said that a rapid onset often indicated a rapid recovery was possible.

Nearly half felt that a swift diagnosis was a key factor in prognosis as this allowed speedy intervention. Again nearly half felt that any treatment should be tailored to the individual rather than simply standardised. This reflects the different symptoms that individuals may be dealing with. Factors were cited such as environment, practical situation, the support network someone has, friendships, and assistance in place can also affect prognosis. Medical factors can include the cause of ME/CFS, how quickly it occurred, severity, how long the person had symptoms before diagnosis, and whether there are other co-occurring conditions.

There was some disagreement around overall recovery rates with one person feeling the evidence indicated only 5% of patients will recover while another felt it was 33%. This was likely to be down to the research they based their views on. Most of the doctors recognised that recovery was realistically somewhere on a continuum and in fact people would not recover to their ‘old’ lives which may have contributed towards ME/CFS in the first place.

The findings show that overall the doctors associated with the charity have a positive and realistic attitude. They support early diagnosis and intervention and this fits with current research findings which suggest GPs would like more support. They encourage a pragmatic view of recovery and we would agree that it may not always be in people’s best interests to return to the life they had.'

https://measussex.org.uk/good-prognosis-possible/






The Sussex ME/CFS Society, as usual, strongly implying that ME is a stress or lifestyle illness. The 'nine specialist doctors' are not named in this news piece, but include the Sussex Society's own Medical Advisors (who are BACME Members according to the Sussex ME/CFS Society) :

Professor Leslie Findlay
Dr Alan Stewart
Professor Neil Harrison
Professor Esther Crawley
Dr Alastair Miller
Dr Jessica Eccles


'Dr Eccles trained in medicine at University of Cambridge and University of Oxford, completing a BM BCh in The History and Philosophy of Science, sparking a keen interest in philosophy of mind and brain-body interactions, and since graduation from medical school has pursued a combined academic clinical path at Brighton and Sussex Medical School. As an MRC Clinical Research Training Fellow she recently completed her PhD in the relationship between joint hypermobility, autonomic dysfunction and psychiatric symptoms and is now an NIHR Academic Clinical Lecturer. She holds honorary clinical contracts with both Sussex Partnership NHS Foundation Trust and Brighton and Sussex University Hospitals NHS Trust.'

https://measussex.org.uk/about-us/medical-advisors/




The Chair of BACME, Anna Gregorowski, attended the Sussex Society's 2021 Conference in Brighton

https://measussex.org.uk/medical-conference-2016/

*****
This is discussed further here:
United Kingdom: Sussex & Kent ME/CFS Society News
 
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MEMarge said:
BACME do have at least one person with ME, who also has at least one adult offspring with ME, as a member.

ETA: Board members: https://bacme.info/about-us/board-members/

Ceri Rutter is described as patient/carer rep and PPI lead
Les Parry runs a local support service. I believe this is in the Liverpool area.
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I know and thank you for clarifying that point.
I rang Ceri recently. This was because I had a specific concern about a workshop given at last year's BACME Conference in November.

I could not access the workshop detailed presentation without being 'a member'.
It came from an NHS Service led by a psychiatrist London area. It conflicted with NICE 2021.
I had seen sufficient for compliant but without the specific presentation detail, the complaint was unlikely to be taken seriously. I emailed the service requesting a copy. They have not replied.
The workshop material is being cited by other new services being set up. It's pure BPS.
 
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