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

Wonko said:
That the opinions of patients who aren't being intimidated, free range patients who aren't under their immediate control, should be regarded as unreliable.

As they respond differently from those held 'captive' whilst undertaking sessions.

Or so it would seem to me.

(bearing in mind that their patients are selected by them, to their criteria/specification, to bias the sample in favour of ones that their 'treatment' may, in their opinion, work on, excluding anyone who has anything beyond mild ME, and primarily those who have 'fatigue' only - as the places that I have seen seem to use the criteria that the primary symptom must be fatigue or your not eligible for their 'treatment').
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I think that's demeaning of those patients who replied positively; why should we presume to discount their experience ? Also I can't see where the patient selection comes in, referral to the service is by GPs, so there's no prior rejection involved. https://www.nbt.nhs.uk/clinicians/services-referral/mechronic-fatigue-syndrome-clinicians
 
I think the problem with doing survey's of patient's opinions of ME/CFS clinics is very skewed if you only ask those still going through their first (and probably only) course of treatment/therapy. It's natural to feel gratitude and relief at getting a diagnosis, and appreciate the initial improvement that can result from the first stage of cutting back activity to try to find a baseline.

If only those who are still in that early stage are asked, the feedback is likely to be very positive from most patients. The clinic did not indicate that they included in the survey patients they had last seen 5, 10, 20 years earlier.

For many of us, while we may still appreciate getting diagnosed, the following years of zero support, setbacks or worse from trying to follow GET advice etc. will give a very different picture. It's disengenuous of the clinic to claim the results show their clinic is doing an excellent job and to dismiss those who responded via social media as unrepresentative.
 
Trish said:
I think the problem with doing survey's of patient's opinions of ME/CFS clinics is very skewed if you only ask those still going through their first (and probably only) course of treatment/therapy. It's natural to feel gratitude and relief at getting a diagnosis, and appreciate the initial improvement that can result from the first stage of cutting back activity to try to find a baseline.

If only those who are still in that early stage are asked, the feedback is likely to be very positive from most patients. The clinic did not indicate that they included in the survey patients they had last seen 5, 10, 20 years earlier.

For many of us, while we may still appreciate getting diagnosed, the following years of zero support, setbacks or worse from trying to follow GET advice etc. will give a very different picture. It's disengenuous of the clinic to claim the results show their clinic is doing an excellent job and to dismiss those who responded via social media as unrepresentative.
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Absolutely. I vote we share your important analysis of this all over SM and at every occasion that a clinic wishes to bring up ‘positive feedback’.
 
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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Peter Gladwell was the physio there last time I looked and I have heard good things about him. He came along to the evening event with Mark VanNess, Nigel Speight and a showing of Voices from the Shadows over 7 years ago. I think he's on the Cochrane panel with Todd Davenport.
 
This research will help us to improve the questionnaire, or to choose an alternative questionnaire which patients find easier to complete.

Not about it being easier (though of course easier is always a plus). It is about it being relevant and accurate. That is the real problem with the Chalder scale. It is neither.
 
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I think it was naïve to combine social media responses with those from recent service users, these are two distinct groups, the former with identities that may be impossible to verify and I think it is reasonable for the Bristol service to question whether it's possible to get any useful patient judgement on what that service is currently doing, from that mixed approach.

It would be good if all health services were proactive in testing their outputs with long term follow ups of large numbers of patients, but I'm not sure even in that case social media would help, other perhaps than identifying some broad areas of dissatisfaction/approval. It really needs proper research approaches that the NHS only manages in a very limited way via the National Clinical Audit Programme https://www.england.nhs.uk/clinaudit/

For a single service in a single Trust, unable to offer long term treatment or support, lacking the resources for in depth audit and faced with the demand to demonstrate continued value to the Trust management, the carrying out of simplistic surveys of recent patients will be a necessity. The service will simply be following common practice within that Trust with a view to avoiding being discontinued by a management that is consistently attracted to sexier and more income generating forms of health provision. It may be self serving and performative but it's a systemic issue, not specific to ME/CFS.
 
Natalie said:
Peter Gladwell was the physio there last time I looked and I have heard good things about him. He came along to the evening event with Mark VanNess, Nigel Speight and a showing of Voices from the Shadows over 7 years ago. I think he's on the Cochrane panel with Todd Davenport.
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Strategically patient orgs have to decide whether to adopt a year zero approach, refusing to engage with anything or anyone that has gone before (IMO opinion a dreadful idea) or engage with people of goodwill in the existing services - my take is that Peter Gladwell is very likely someone the Orgs can profitably engage with.
 
"Putting theory into practice"

There is literally no theoretical basis to any of this. No coherent scientific theory has ever been put forward, let alone validated. Even the biopsychosocial model is just a set of vague ideas that mostly amount to: it's holistic, which normally means pseudoscience.

It's all on the basis of pragmatic trials performed very poorly, no theory anywhere to be found. The underlying belief is the mythical conversion disorder, which has no evidence and no theory either. It's all conjecture and speculation dating back to the late 19th century.

In fact when you ask the ideologues what their theory is, they malfunction and talk nonsense, can't even say it out loud because they know they have nothing, "What's you theory?" "Not a scientific question":

Sharpe-blocks-reasonable-questions2.png
 
What do the terms CFS and M.E. mean?
has a short history of the names and diagnostic criteria.
ends with this

The term CFS also doesn’t help other people to understand the wide range of symptoms which are part of the condition. Fatigue is not "just tiredness": they are very different experiences. Healthy people may feel “tired” if they have been doing a lot, or perhaps if they are short of sleep, but they would expect to feel better following rest and sleep. It is possible for healthy people to "push through" when they are tired. In contrast, fatigue is a much more profound experience, which is often described as exhaustion, and can also involve weakness.
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so why does most of NHS say main symptom is extreme tiredness?

A particular aspect of the fatigue of M.E./CFS is known as "post exertional malaise", which is a term that means that the fatigue will tend to be worse a day or two later than the triggering activity.
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another mis-interpretation of PEM.
https://www.nbt.nhs.uk/our-services/a-z-services/bristol-me-service/what-do-terms-cfs-me-mean
 
article in Bristol.

https://www.bbc.co.uk/news/uk-england-bristol-63417363

am highlighting it because it again says

"ME, which is also called chronic fatigue syndrome, is a long-term condition with a wide range of symptoms, the most common being extreme tiredness."

linking to the NHS chronic fatigue syndrome site.

this really needs sorting out.
until it is journalists need to be constantly made aware of the NICE guidelines description:
All of these symptoms should be present:

  • Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.

  • Post-exertional malaise after activity in which the worsening of symptoms:


    • is often delayed in onset by hours or days

    • is disproportionate to the activity

    • has a prolonged recovery time that may last hours, days, weeks or longer.
  • Unrefreshing sleep or sleep disturbance (or both), which may include:


    • feeling exhausted, feeling flu-like and stiff on waking

    • broken or shallow sleep, altered sleep pattern or hypersomnia.
  • Cognitive difficulties (sometimes described as 'brain fog'), which may include problems finding words or numbers, difficulty in speaking, slowed responsiveness, short-term memory problems, and difficulty concentrating or multitasking.
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https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#diagnosis

although having said that, this section was quite difficult to find in the guidelines; there doesn't appear to be a brief description of the main symptoms in the Overview or Information for the Public, and in fact they link to the rubbish NHS site:

"
Where can I find out more?
The NHS website has more information about ME/CFS."

https://www.nice.org.uk/guidance/ng206/informationforpublic

@adambeyoncelowe
 
Sly Saint said:
article in Bristol.

https://www.bbc.co.uk/news/uk-england-bristol-63417363

am highlighting it because it again says

"ME, which is also called chronic fatigue syndrome, is a long-term condition with a wide range of symptoms, the most common being extreme tiredness."

linking to the NHS chronic fatigue syndrome site.

this really needs sorting out.
until it is journalists need to be constantly made aware of the NICE guidelines description:

https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#diagnosis

although having said that, this section was quite difficult to find in the guidelines; there doesn't appear to be a brief description of the main symptoms in the Overview or Information for the Public, and in fact they link to the rubbish NHS site:

"
Where can I find out more?
The NHS website has more information about ME/CFS."

https://www.nice.org.uk/guidance/ng206/informationforpublic

@adambeyoncelowe
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All I can say is: people are aware and watching. I can't say more right now.
 
Natalie said:
Peter Gladwell was the physio there last time I looked and I have heard good things about him. He came along to the evening event with Mark VanNess, Nigel Speight and a showing of Voices from the Shadows over 7 years ago. I think he's on the Cochrane panel with Todd Davenport.
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I've just been reading the following webpage: https://www.nbt.nhs.uk/our-services...UP2jiXi_SFMtsi2b8oezmFFV4OU6MVQIURGsUYJDuym5c

and note the clinic states the following:

Bristol M.E. Service is a specialist NHS Service for people with ME/CFS which has been offering evidence-based care since 2004.

We offer an outpatient service to people living in Bristol, North Somerset, and Gloucestershire. We can offer a combination of telephone, video and face-to-face contact, and can offer support individually in in groups. Part of our role is to advise and support other Health Care Professionals in the clinical management of people with M.E./CFS.

The clinical team includes Occupational Therapists, Physiotherapists and Psychologists, as we offer a multidisciplinary team approach. We do not currently employ a medic as there are no evidence-based medications for ME/CFS which cannot be prescribed by a GP. We maintain close links with other hospital specialties within North Bristol NHS Trust, at United Bristol and Weston Hospital NHS Foundation Trust and Gloucester Royal Hospital.
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With the recent issues regarding those seriously ill in hospital with severe ME/CFS struggling to get appropriate care and adjustments this poor excuse/presumption (and the fact that it is accepted by those commissioning and other oversight) seems like one big source of the issue.

Even if that were the case - but it is actually creating a self-fulfilling prophecy rather there - there are multiple other reasons why clinicians are needed. And those who are studying longitudinally how pwme illness and health progresses. And the point of a clinic is because the GPs generally don't know, and we know the hospitals don't so the whole thing is destined to be tinted only by dimensions that are somewhat 'surplus to requirement-nice to haves at best' vs the essential care.

I'm all for those who are less severe to be properly monitored in clinics because the best way to treat is stop it getting so bad as severe and very severe - but if those people can't offer treatments, advice, advocacy and intermediary to learn about the most severe they will not be seeing them - when they are probably the ones and situations they need to know most - so how will they know what that involves and when someone is showing signs of going downhill and what that means in order to act with certitude realising how bad it gets etc.

It astounds me the logic and if they really think their words make sense when they are said because if it was e.g. MS or cancer and clinics only offered things that helped a bit maybe when people were stage 1 or 2 then said similar statements regarding not needing clinicians because there were no treatments GPs couldn't prescribe to those milder it would be ridiculous - people would be expecting to be monitored by someone who has seen all the stages and signs and can prescribe for related issues that affect the health (isn't that what real holistic is? whole person). How is anyone going to learn what helps for about as heterogenous a population as you get if you come up with weak excuses to never put anyone in front of any patients so they can see the spectrum and get experience of paths and what helps.

and of course those with ME/CFS will often develop other problems with their body, other comorbidities or maybe even their illness becomes predominantly something else (I've known a number of people over the years end up with RA - is ME diagnosis the early stage and it is just 'missed' by current processes for those demographics or were they not being checked when they could now or is there something about certain types of ME/CFS that make people more susceptible I don't know).
 
Sly Saint said:



from the rest of the thread this appears to be a leaflet supplied by the Bristol ME Service.
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Bit of a concern about the 'Patient Approved' stamp on the back of this given the blurb from BACME on patient input and wondering whether it's an example of a similar approval process

Now this is really just a story of a delusion they tell themselves isn't it. 'Manifesting' is it called? To make up how you want the world to be in order to deny reality and make it so. Constructivism. Write stories about how you had a job where patients actually did get better from what you do even though you are still doing what you want, and in your head that will become [your] reality. But now... it's so strongly believed in someone thinks it can heal.

Although to be fair I guess these example pages were nicked from elsewhere as they seem to be written for kids, whereas the other pages have totally different tone, level of language and concepts - different author almost certainly.

And I see the author is now trying to rewrite more of our language by inserting 'setbacks' for PEM, crashes etc. I think this needs to be jumped on by charities as another minimisation term

What always freaks me out with these docs on said delusions is the amount of pseudo-detail they go into - in their regimes for others, whilst still managing to not even accidently every so often 'get the point' (law of probability you'd think maybe).

I guess they are paid by the minute or slide, so have to really expand out your material, hence all the sub-sections micro-managing or explaining what the word compromise means? And such serious suggestion that people need to be 'really accurate' in measuring their 4 or 6minute walk [to make sure you waste cognitive energy too] and notes etc. The irony given even according to their 'pretend-evidence-based' they don't measure because: "It's about perceived activity increasing, not actual, silly, that makes their fatigue disappear".

On a serious note, given we've gone through all the grace periods, reminders etc by now

Surely this as material should be enough to sack the people delivering this given the clarity of instruction in the guidelines, and remove the contract from those leading it. If they didn't understand the new guidelines and PEM/PESE, they've a major competence issue they haven't resolved. If they think they did we've got a 'won't do the job' issue. It's been a year, this was published 2mnths after guidelines.

You can't have some being paid for spouting health damaging nonsense. It's anti health and anti mental health and worrying for the writer (do they still believe that, are they the one also delivering the service?). And for someone to not have realised this was so harmful, as demonstrated by not having immediately ensured something appropriate was done with it to prevent its distribution which could cause harm, is either competence or chosen ignorance again surely.

If you subbed-in diabetes mellitus/sugar instead of ME/Graded exercise, and it is a manifesto using childish example stories to persuade patients to start eating spoons of sugar and keep increasing - "you'll feel ill in response, but just ignore this and do more sugar"

Which when you put it that way makes it very sinister indeed to think about what someone is basically targeting pwme to do and writing leaflets to encourage those surrounding them to help enforce. It's even more sinister for the 'it will make you feel awful but that's not really you being ill' strange new lines they've all got into recently .


So I say there should be questions regarding safety to work in services where there is such responsibilities and power differentials, and really there should be direct liability shouldn't there (?) - I'd personally say at least in basic common sense and moral terms - that this person is trying to encourage those with a certain condition to do things that will harm them. And that is foreseeable as an outcome. I'd suggest anyone who does end up doing this - which I wouldn't recommended - uses wearable tech (and downloads it as records), emailing ie in writing any anomolies to said clinic to make sure there is proof they are informed) and does indeed take notes and diaries of instructions and exactly what is said to them in case of that. What if there is a personal injury from it? Someone heading it up had been informed it was GET and banned etc

I'd like to think that now, as patient, calm people we are at least allowed to start pointing out these plain things in basic terms without having to fawn to some pretence that there's any accident or confusion given its over a year on from clearly instructive guidelines, most/many have had direct contact from MEA, and before that there was an additional however long with the guideline process itself. To explain it.

For even psuedo-services (what I'll call anywhere that does short courses then never sees the patient again, and the main job is to take patients out of the health system) surely there comes a point where there is a limit
 
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this is still coming up if you google treatment for ME

(it's the 'old' BACME guidelines before their epiphany)
Guidance for therapists covering the provision of therapy for CFS/ME. This includes a
list of resources (available on the website BACME.info) for use in therapy, as well as
guidance on support and supervision.It does not replace specialist CBT and GET
training (recommended by NICE and available at www.PACEtrial.org). It represents pragmatic recommendations from experienced clinicians
to guide practice when seeing adults with CFS/ME, where specialist CFS/ME CBT and GET therapists
are not available/appropriate.
It is informed by these approaches.
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https://www.nbt.nhs.uk/sites/defaul... Therapy and Symptom Management in CFS ME.pdf

but I can't find where the link is on the website. Might just be a rogue file/link. Be good if they could delete it.
 
It's M.E. Linda said:
I have emailed and asked for it to be deleted as it is a pre NG206 document.
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It is just incessant isn't it, pulling teeth to get anything down or they make a tiny inconsequential change. New things go up that are wrong. You wonder whether they know how wrong and damaging all of this is or if they live in a world where they genuinely think this is 'help' of some sort, 'just a document', 'only their job' instead of horrendous continual prompting of gaslighting our lives and how everyone treats us. Where is their accountability.
 
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