Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Bristol M.E. Service: Supporting people with M.E./CFS and PVFS across Gloucestershire, Bristol and North Somerset

We have renamed our Service from "Bristol CFS/ME Service" to the "Bristol M.E. Service", in line with the change to the name of the condition (from CFS/ME to M.E./CFS) suggested by the updated NICE Guideline . We recognise that many patients and patient charities prefer the term M.E., which was the original term used in the UK.
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https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service

They have yet to update the website where Chronic fatigue syndrome/ME is used .

eg
Chronic Fatigue Syndrome/ME Therapy
We aim to help patients and their doctors to identify the condition, and then offer support to manage it as effectively as possible.

We can help to reduce some of the symptoms using medication and other approaches, but many people face the challenge of living with these ongoing symptoms for some time. We know that CFS/ME can gradually improve in many people, and the service that we offer can increase the likelihood of progress and recovery. We also know that learning ways to manage the condition can help people to make improvements in quality of life. For example, many patients experience a delayed increase in symptoms a day or two after an increase in activity levels. This is known medically as “post-exertional malaise” but it is known to many of our patients as “payback”. This delayed response can make the illness particularly difficult to manage. Through learning self-management skills, people can reduce the likelihood and severity of this “payback”. This can provide a more stable situation which allows some patients to gradually build up important activities.
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https://www.nbt.nhs.uk/our-services...syndromeme-service/chronic-fatigue-syndromeme

New section
This is ME
Developed in partnership with Action for M.E. this new resource aims to help you get the right sort of support from paid carers and other professionals working with you. It could also be adapted for use in employment and educational settings.

It offers a brief explanation of CFS/ME and its impact, and some checklists that you can use to show how CFS/ME affects you, and what helps you to manage this. Our aim is that this will save you time and energy when you get a new carer or other support professional.

We have included a list of common symptoms and space for you to indicate their impact on your:

  • mobility
  • concentration and memory
  • hearing and eyesight
  • sensitivity to light and noise
  • communication
  • sleep
  • personal care
  • diet and medication.
It also supports you to explain really clearly how you need to manage your activity and your daily routine.
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"
Download this resource:

or visit www.actionforme.org.uk/thisismeresource

We would love to hear your feedback about how effective this resource has been for you, and any suggestions you have for improving it, including supporting its use in other settings (e.g. employment or education). Action for ME are co-ordinating this feedback, and you can offer them your feedback using this brief questionnaire which is available on their website: www.surveymonkey.co.uk/r/ThisisMEfeedback "

https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/me
 
Sly Saint said:
https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service

They have yet to update the website where Chronic fatigue syndrome/ME is used .

eg
Chronic Fatigue Syndrome/ME Therapy

https://www.nbt.nhs.uk/our-services...syndromeme-service/chronic-fatigue-syndromeme

New section
This is ME

"
Download this resource:

or visit www.actionforme.org.uk/thisismeresource

We would love to hear your feedback about how effective this resource has been for you, and any suggestions you have for improving it, including supporting its use in other settings (e.g. employment or education). Action for ME are co-ordinating this feedback, and you can offer them your feedback using this brief questionnaire which is available on their website: www.surveymonkey.co.uk/r/ThisisMEfeedback "

https://www.nbt.nhs.uk/our-services/a-z-services/bristol-chronic-fatigue-syndromeme-service/me
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similar to dementia/ parkinsons ones
i think the tone could be improved
 
Should be a positive change but this is not a turd that can be polished. There has to be a complete break away from the failed model, this is simply not going to happen like this, as if decades of hostility and lies, all the death and suffering they caused, can be swept like it never happened. More than anything it shows they take no responsibility for what they did, that they think they can simply slap a "NEW, now with 30% more!" sticker and pretend it's all good. It shows "do no harm" means absolutely nothing to them. Which we know, but that they basically reaffirm it is just another slap in the face, everything about them, never the patients.

The clinics on the old model should be closed and held as a lesson in failure and how not to practice medicine. Anything else is whitewashing. It didn't have to be this cruel and insulting. It was, can't undo that.

Especially given this is Crawley's place. Is she still part of it? Because the stink of her failure can't be washed away, no matter how many coats of paint they put on the walls.
 
Trish said:
Crawley runs the Bath paediatric ME clinic, not this one.
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Ah, she is (or was) at the University of Bristol, not the clinic. Still, the old clinics just don't have a place anymore than an HIV deniers den has a place in anything AIDS. Especially given that it was confirmed that they do no monitoring of any kind, don't even keep records or have an oversight process, everything is glitzy and ad hoc. If they want to start over from scratch with different people, fine, but slapping a sticker on a bunch of hot air doesn't change its content.
 
The CCC Overview, page 1 says: "In a review study of prognosis, 5 of 6 studies indicated that 0% to 6% (the sixth study indicated 12%) of adults return to their pre-illness level of functioning....Objective postural cardiac output abnormalities correlate with symptom severity and reactive exhaustion."

The BPSers would perhaps say this is being a typical negative pwME, but managing ME is only partially possible at the very best. Lots of people only get through each day because of sheer will power and determination.

Repeatedly mentioning employment and education seems to be trying to plant the idea that this is quite possible, when stats don't prove this.

I think the reality of ME, and the aim of this organization are on different tracks.
 
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alktipping said:
typical of the British establishment and probably everywhere else . whenever something has been a monumental failure just rename it knowing that the whole thing will eventually be forgotten.
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There's Orwellian renaming where the objective involves various forms of deception, I guess one might argue here that deception is being achieved by appropriation of a name that has validity, while maintaining an invalid service. However I think the speed with which this has been done probably suggests something more positive - an actual willingness to accept the new Guideline as the de facto basis for the service going forward.

The Bristol service was up and running before PACE and although it was a PACE participant its staff had published an earlier paper that used something closer to pacing than to GET. It may be that the PACE hegemony isn't as absolute as it may sometimes have seemed and that some local managements will take the opportunity to break free of the PACE mafia's stranglehold. It may only be a small step but encouraging those small steps is probably a good strategy if it helps break what has long seemed to be a PACE focussed consensus among the service providers.
 
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rvallee said:
Ah, she is (or was) at the University of Bristol, not the clinic. Still, the old clinics just don't have a place anymore than an HIV deniers den has a place in anything AIDS. Especially given that it was confirmed that they do no monitoring of any kind, don't even keep records or have an oversight process, everything is glitzy and ad hoc. If they want to start over from scratch with different people, fine, but slapping a sticker on a bunch of hot air doesn't change its content.
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What is the about no monitoring? Surely every service has to report against its funding...right?

This got me thinking about that ideal service document and what results would patients want clinics to be held to account to ie what they have delivered, what they have effectively measured, and what results patients actually benefitted from. Results should be more publicly available.
 
It offers a brief explanation of CFS/ME and its impact, and some checklists that you can use to show how CFS/ME affects you, and what helps you to manage this. Our aim is that this will save you time and energy when you get a new carer or other support professional.
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Bolding mine.

So the banner name has changed but not what they consider the condition to actually be - or has not CFS/ME been 'code' for psychological?

and hasn't the aim of these places been to stop people getting carers, or support - because they don't consider us to deserve them, what with us just being......and not actually ill or disabled?
 
Wonko said:
Bolding mine.

So the banner name has changed but not what they consider the condition to actually be - or has not CFS/ME been 'code' for psychological?

and hasn't the aim of these places been to stop people getting carers, or support - because they don't consider us to deserve them, what with us just being......and not actually ill or disabled?
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Most people working in the NHS have not signed up to, indeed very few including those working with ME/CFS patients, even know about the treatment philosophies of the BPS zealots. They may have misperceptions about ME/CFS but very few would actively seek to deny patients help and support that is available to them.

I don't think that the order of CFS ME or ME CFS or single use of ME or of CFS, is a certain predictor of how any individual in the NHS sees the illness, though of course the BPS zealots have wanted to control the narrative by taking ME out of the picture or being absurdly macho in insisting CFS has to have primacy. Also at this stage I wouldn't read anything much into how the differing terms are used in NHS materials other than to note how diligent a service, department etc is in responding to the new Guideline.

Most changes to existing media will be down to a graphics bod, or tech person likely based a cursory discussion on what alterations are needed and are who left interpreting a hasty email sent out from some far distant manager or Department Head's overworked assistant.
 
This isn't 'most people in the NHS', whom I agree may not have any interest or knowledge.

This is a rebranded ME clinic, who have presumably been working for many years, under the 'old' philosophy that abuse is right and what is best for us. Presumably staff that didn't believe this, seeing the results of the BPS approach, moved onto something else, suggesting that a lot, if not all, of the remaining staff are in fact hard core BPS, even if they don't know it, or have never heard of the BPS approach (which given the area they are working in seems unlikely).
 
It's a long time since I was there and personnel have no doubt have changed - my estimation from getting on for two decades ago was: decent, kindly professionals doing the best they could with inadequate knowledge. I certainly don't recognise a characterisation of some kind of torture farm.
 
20 years was largely before the mass adoption of the BPS instigated policy of ignoring patients when they said that harm was occuring, lie to them, and keep pushing them do hurt themselves more - and don't bother to record their whining.

Of course after 2007, the entire system, and not just some people working in it, decided that this was a perfectly acceptable way to treat people. sick people.

Is it still torture if you force people to do it to themselves? lying to them to get them to do so? Or just abuse.

There was a frequently repeated post on here a few days ago, that I can't find ATM - about a bedbound (i.e. severe) person who had been abused, badgered, and belittled by someone from an ME clinic, who had tried to comply with GET and been unable to, and how she was treated when she told this to her HCP, and how this made her feel.

That is abuse, of a patient, by a HCP.

A HCP who has presumably been told that this is perfectly okay, coz it fits with the BPS playbook.
 
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Apologies if already posted

"Out of the 612 responses before the 23rd July 2019, there were 99.8% positive responses to the primary question, with only one person (0.2%) responding negatively. There were three comments that critiqued Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). After this date, the survey URL was shared on social media, resulting in a reduction in the positive responses (from 99.85 to 70.6%), and a rise in negative responses (from 0.2% to 29.4%). There was also then a highly critical focus on CBT, GET and the PACE trial. We were interested to note that these views did not match those initial responses of the NHS patients.

As this finding raises doubts that surveys using social media can accurately represent the experiences of NHS patients accessing specialist services, this survey finding is concerning given the fact that the 2020 NICE review panel used similarly sourced material provided by service user organisations. Therefore, there is a clear case to be made to develop this methodology for the future in order to continue to learn from the experience of NHS patients."

https://www.nbt.nhs.uk/our-services...ic-fatigue-syndromeme-service/nhs-survey-2019

I'm not really sure what they are trying to say..?
 
Sly Saint said:
The Bristol Clinic is (I think) largely run by BACME people, so I'm guessing this is part of the 'rebranding'
https://www.s4me.info/threads/unite...ssociation-for-cfs-me.7900/page-5#post-365685
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Bristol M.E. Service and the 2021 NICE Guideline
We welcome the publication of the update NICE Guideline, and acknowledge the huge amount of work which has gone in to producing this expanded and updated Guideline. There is a detailed statement about the new Guideline produced by BACME, and our Service fully supports the position which BACME have taken regarding this new advice: https://www.bacme.info/sites/bacme.info/files/BACME%20Press%20Statement%20NICE%20Guideline%20publication%20Oct%202021.pdf
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We have also just completed data collection for another study which aims to understand more about how people living with M.E./CFS complete a commonly used fatigue questionnaire, the Chalder Fatigue Scale. Some of our patients have found this questionnaire difficult to complete, so we invited patients to take part in this qualitative study which will help us get a fuller understanding of these difficulties. This research will help us to improve the questionnaire, or to choose an alternative questionnaire which patients find easier to complete. We are currently analysing the data, and we are very grateful to the patients who gave their time to take part.
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https://www.nbt.nhs.uk/our-services/a-z-services/bristol-me-service/bristol-me-service-news

M.E./CFS Useful Resources
Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME (2009)
Authors: Bruce Fernie and Gabrielle Murphy
Publisher: Karnac Books
ISBN: 9781855755376
This book is written to help patients to develop and apply new insights into overcoming some of their specific symptoms as well as coping with M.E./CFS, both during the course of their therapy and afterwards. It provides a structure and framework for understanding M.E./CFS and its effects as well as practical approached to help address some of the symptoms.
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The British Association for Clinicians in M.E./CFS (BACME) www.bacme.info/BACME
BACME is a multidisciplinary organisation which promotes and support the delivery of evidenced based treatment for children, young people and adults with M.E./CFS throughout the UK. BACME have written a Therapy Guide and a Symptom Management Guide, based on clinician expertise, patient experience and the best available evidence, and both are free to download from their website.
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https://www.nbt.nhs.uk/our-services/a-z-services/bristol-me-service/mecfs-useful-resources
 
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Trish said:
I think Crawley is at the Bath Peadiatric clinic.

I think the Bristol clinic is led by Hazel O'Dowd.
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Always a confusion because Esther Crawley is a Professor of Child Health with the Bristol Medical School which is part of Bristol University, AND she is also head of the Bath Paediatric CFS service, which is run by the RUH Bath NHS Trust, while the Bristol Clinic is run by the North Bristol NHS Trust whose main hospitals are a couple of miles from the Bristol Medical School buildings.

After a quick look at the North Bristol NHS Trust web pages Hazel O'dowd is listed as Head of Department for the Pain Clinic which is AFAIK located at the sprawling Southmead Hospital site while the ME/CFS clinic is only listed at the much smaller Cossham Hospital. The Bristol ME/CFS service developed within the Pain Clinic at the then Frenchay Hospital site under a now defunct Trust, before transferring wholesale to NBT so I would guess that O'dowd has Departmental responsibility for the ME/CFS service but may no longer be day to day lead.

Edit - from the BACME who we are page:

"BACME Board Member Dr Pete Gladwell BSc, PhD, MCSP. Pete is a Clinical Specialist Physiotherapist in the Bristol Chronic Fatigue Syndrome/ME Service and team lead. He also works in the North Bristol NHS Trust Pain Management Service."
https://www.bacme.info/sites/bacme.info/files/BACME Board Members Oct2021.pdf
 
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