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

@Sly Saint Are you able to provide me with the website link to the “google treatment for ME” that you used, where you located this file please?

The clinic cannot locate the pdf on their website but would like to correct this mistake if you are able to point them in the right direction of where you found the rogue file.

Thanks in advance, Linda

 

there is no website link; the direct link to the pdf just comes up on its own in the search.
Their IT people need to locate it in https://www.nbt.nhs.uk/sites/default/files to delete it.

 

Thanks both, I have just been acting as an go-between to try to get this deleted.

The Trust has found no live content linked to it so the PDF is going to be deleted and it should disappear very soon.

 

Copied from the UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
Peter Gladwell is part of the team involved in an MEA funded project to develop PROMS to be used in clinical care and service evaluation

I've come late to this thread but saw at the beginning Pete Gladwell is involved & @Trish's wariness of him and I've skimmed through as much of the other comments about him as I could.
Just based on my personal experience, I don't think he should be involved in any ME Research.
While he was extremely helpful in referring me to Cardiology for PoTS in 2020, based just on fitbit data and a discussion of my symptoms, that's where his helpfulness ended.
When I contacted him in 2021 about my concerns with the Long Covid Service (which he sits on the MDT of, or at least did at the time) referring me to the Your Covid Recovery app (essentially an unsupervised GET programme) after only a 1 min sit-stand test that I couldn't complete and caused a severe collapse shortly after, his response was kind of 'c'est la vie'.
He's not my main contact at the ME Service but I had a f2f appointment with him in 2022 for a mobility assessment that the Long Covid Service had failed to provide. I provided him letters from the two physios I was seeing in early 2020 (before I got Covid/ME) detailing the various findings of muscle weakness and paraesthesia in different limbs. He thanked me, said they were really useful, photocopied them but didn't examine me! He tried to do a Beighton test just because I'd mentioned a lot of people I follow on social media have EDS & I was wondering if the wrist supports they use would be useful for me (who doesn't), all while I was saying "I'm not hypermobile. I've never been hypermobile". He admonished me for not trying hard enough, even though I'd just told him my tendinitis causes severe pain when I bend my wrists back.
He said I used my crutches well, which was one of the things I wanted to know, but I mainly wanted an assessment of my mobility *without* crutches.
Then he just told me to do some heel lifts, saying "it's neuroplasticity".
There was also a bit where I was trying to get him to examine my ?Sciatic pain from a procedure performed in the same trust where I think he was trying to hint (without examining me) that it was FND, although he wouldn't say the words.
I changed the follow-up to a phone appointment because I wasn't going to waste my energy again. When I said I hadn't really been doing the heel lifts (largely because I'd crashed after that appointment that was also on the hottest day of the year) and didn't find the appointment useful, he again brought up neuroplasticity and said something like "It just means the more you do something, the easier it is. That's all neuroplasticity is". Like, no it isn't?
Oh, and I brought it up in a Twitter convo recently with Karen from Physios for ME and she said those exercises are for strengthening the calf muscles, but my weakness is in the thigh muscles - as stated in the letter I gave him! So maybe he's not even a very good physiotherapist for general MSK issues.
Lastly, he must be responsible for the Bristol ME clinic's policy of not diagnosing ME in people who have Long Covid (see attached letter*).


*A copy of the letter is in this post:
The disappearance of ME/CFS

 

Thank you for sharing. I'm sorry to hear of your illness and experiences.

The letter is particularly insightful and can be taken a number of ways reading between lines. However on clear message comes through to me which is that they very much have an eye on the data when they are thinking about whether to keep those with 'post-covid' as they refer to it separate from those with ME. I wonder how much of this is 'argument' to convince that this is what they want to do in these cases vs 'policy' and all these things really have fed into their decision pre-hoc (or just one or two and the rest are red-herrings and post-hoc justifications to hide the lead).

They clearly are aware it affects a number of things (research potentially, prognosis data, funding for services) and at the individual-level which guideline you sit under/they would have to treat you with and .. I'm not sure about the suggestion of 'morale impact of having two diagnoses'.

But the amount of the letter mentioning/describing the data is interesting. They are clearly conscious of how such things affect what is in said data and what that might impact.

I wasn't aware that clinics did keep follow-ups on people who have had ME for 5yrs ongoing. Or that records were kept well-enough that prognosis data would be representative or accurate, particularly with GP records so that it wasn't just those pwme well enough to complete clinic requirements/finding said appointments useful and continuing there.

I'm also intrigued whether getting another diagnosis of ME/CFS on top of post-covid would appear in their long-covid figures and if so what that would look like and do to whatever they might report on.

Whilst all of these things in a general sense (apart from the morale bit) might be valid to touch upon as things requiring thought, they've kept it all very general and theoretical about how it is being used and categorised.

Do you have/are you prepared to describe what further data you think they might have been collecting on you so far at the LC clinic? inc questionnaires or any other data that has been ongoing 'monitoring'? and if they've had you on any specific sort of programme or treatment/management they might almost be trialling?


I'm curious whether they are being given top-down guidance on this, and if so where from and at what level (Trust level, national, BACME?, is it scientific, is it consistent across all in a good way). Because if they are that important / we all know they are that important and there will be sometimes a tug between how to best meet individual need at the time vs long-term research needs then it can't be different people doing their own thing.

And of course the methods by which these things are organised and then analysed directly could affect the conclusions drawn. SO they know, and decisions have been made by them of what they want to do and why (but have we got the full picture in the letter). But that doesn't confirm or give details on how they are being used from there. Which are also just as relevant to the things he has mentioned.

 

Speaking from my own personal experience, they didn't even follow up my failure to return the 6 months follow-up. I was too ill to complete it and my husband was too busy, caring for me and helping out his disabled parents. There was nothing except a letter to my GP to say how well I'd engaged with the group during the course and my gp wrote back saying something like he was afraid that I would continue to deteriorate. I only discovered this after I asked for a copy of my medical records.

 

Wow, so the GP actually wrote back - I'm guessing there would have been another letter in your records if they had responded to the GP with any concern/offer of help/thanks for being informed etc?
Interesting that the GP didn't mention this to you at the time, if I have read that correctly?

Be interesting to see whether this pretty important 'prognosis' and feedback information was logged and used in the assessment of how the service and what they were delivering were doing? Do you at least know which address it went to from the point of view of who must have seen it?

And what at the time was the method of feeding in any info/what was being used to assess service ie 'barriers to inclusion in data'. Was it the case that the only way someone's outcome was included was if they completed the course according to the satisfaction of the leader, were still standing and well enough to attend at the end, and only had a choice from 3 boxes saying 'great', 'fantastic', or 'somewhat better' to choose from otherwise had to leave it blank or don't know? for example. Do you have any data they presented covering that time period to their commissioning board or other assessors to see whether you could possibly have been included as a 'result'?

 

Me and Lc are basically the same thing, apart from when they’re not. It’s important to group them together but keep them separate. Long Covid is fertile ground for reintroducing BSP concepts at which point the sucesses can be mapped across to pwME to start similar treatments.

 

I believe it's all about funding. I'm sure they're getting extra funding for treating Long Covid patients as well as ME patients and they're treated differently. That letter came about because I arranged an appointment to ask for an ME diagnosis, which I believe is appropriate, and I wanted it on my record for the little protection offered by the NICE guideline and so I could participate in research like Decode ME (I was able to as I enrolled while I briefly had ME coded by my GP just because I kept saying it during an appointment). Now, this OT originally diagnosed me with PVFS in October 2020 and only changed it to 'Post Covid-19 Syndrome' when the diagnostic codes became available, so I didn't think I was asking anything strange but she freaked out, saying "I wouldn't know how to move you from a Long Covid pathway to an ME pathway". Considering I'd had zero treatment from them before being put on a 'patient-initiated contact' list (which gets you discharged from the service if you don't contact them after a year), I don't see what difference it makes which "pathway" I'm on. For the LC peeps, I know they had some sort of group sessions on Zoom, but she said I wasn't "ready" for that because I needed "to rest more". I did, but I suspect she knew it wouldn't be a good fit as I'd scrawled "no GET or CBT" on the intake questionnaires, went into the first appointment quoting the draft NICE guideline, and vociferously answered back when she told me to stay offline. I've heard from other people that it was basic advice about sleep hygiene, diet etc and they didn't really get to talk to the other group members. I know one person who's been on the ME pathway (although it may also be from Covid, given the timing) was sent the classic PACE-style leaflets about graded exercise and false illness beliefs in 2022.

The bit about "accurate coding" particularly irked me because I'm a Clinical Coder and I know with ICD-10, optimal coding of 'Post Covid Condition' requires coding every condition and/or symptom caused by Covid in addition. SNOMED codes, which are used in Primary Care cross-map to ICD-10 so, in my opinion, the same coding rules should apply. I'm not sure why, as a Secondary Care service, they're even wading into "how data is collected in Primary Care". It's also interesting that Dr Gladwell had no qualms about diagnosing me with PoTS in addition to Long Covid.

I thought the research they cite to back up their position was very cherry-picked as we all know people develop ME from mild illness (as well as other immune insults). I admit I didn't re-read the letter before posting because it would annoy me, but I think you were asking about something it said about implications for future research, to which I also say "pish!" The problem with almost all Long Covid research is it doesn't discriminate between groups of people with different symptom profiles, and doesn't include ME. Maybe their argument makes sense if I was asking to change my diagnosis, but I was asking for an additional diagnosis, which is just accurate, as science and medicine should be.

The Long Covid Service is a separate service to the ME service, run by community care (but with guidance from P Gladwell and the ME Service) and all they offered was the Your Covid Recovery app (which the physio I dealt with initially kept referring to as "our programme"). They were supposed to contact me a certain number of weeks later to see how I was getting on, but never did. I had to beg for the mobility (and cognitive assessment, which they did at the same time), even though they're supposed to be part of the initial assessment. The cognitive assessment was just a MoCA which, because I scraped a pass despite blaming out in the middle, they said I'm fine (but they hadn't asked my education level, which is supposed to alter how they grade). They didn't assess my mobility at all - just offered some NHS mobility aids that I'd already explained were unsuitable, and why, and made snarky comments about the crutches I was thinking of buying (I wanted the assessment partly to know if they'd be suitable before I splashed out - fortunately they were). I got a discharge letter from the LC service after a long period of no contact. I don't know what data they collected, but I did at least make a complaint during my time under them.

Note: edited section on coding after re-reading the letter.

 

I can't work out this multiquote thingy so I'll answer your questions by paragraphs:

Para 1:

Yes he did and I knew because he sent me a copy at the time. He'd had to sign me off work again as a result of the fact that 2 days after the conclusion of the 6 week course I'd completely collapsed and was bed bound. After the first 4 sessions where I'd previously walked up the stairs in the hospital to the clinic, by week 5 and 6 not only was my husband having to drop me off right outside the doors of the hospital, but I was also walking with a stick for stability, and using the lift in the building. ​

Para 2:

Bath end of 2011. They repeated the same SF36 etc questionnaires to evaluate outcome on the last session of the course week 6. I was feeling really rough at the time, obviously, I vaguely remember scoring higher for mental and emotional impact but lower on fatigue, pain etc. 6 month follow up I couldn't complete, can't remember if I had a 12 month questionnaire come through. That'll be a matter of record anyway.​

Para 3:

Most of 2012 was spent bedbound. I can't remember who made the referrals but OH/OT arrived as did community stores equipment and adaptions to home. Fully disabled. The re-ablement team suggested I engage with them. I declined to consent, I'd learned my lesson - trust destroyed.​

3 months after the end of the course I read this: ME is often dismissed – but sufferers like Emily Collingridge are dying | Scott Jordan Harris | The Guardian

I had absolutely no idea that this was a possible outcome. We had been shown something on the course that something like 60% of people recovered and the only barrier to that was not following management tools. That's why I was fully engaged in participation.

Spent the rest of the year trying to recover to my pre-treatment capacity without enormous success. Like Jo Bruce on the Channel 4 news report my life became moving from bed to sofa, although unlike her I wasn't able to cope with getting dressed and undressed. World's largest genetic study of ME offers hope to sufferers (youtube.com)

After exhausting employer company sick pay (6months) spent next 6 months on SSP. Family finances were in the toilet and by then of that period in time, next came the fitness to work process with employers. Oxford based HR dept employed external 'expert' who said illness was not permanent. Ill-health retirement denied.

2012/3 Application for state benefits then was DLA and ESA. Clinic was requested to provide evidence of disability which it did without hesitation. Citizen's advice completed the forms with evidence and both benefits granted without further need for DWP assessment, and both were granted for an "indefinite" period award.

2014 my husband died.​

I did not give valid informed consent because the GMC and BMA guideline on obtaining consent were not complied with and I was harmed. Montgomery 2015.

Do you remember our discussion on the two 2013 service evaluation papers of Crawley and Crawley and White? Under the phrases on any research paper "lost to follow up" or x number of questionnaires not returned, are un-assessed and un-evaluated stories of harm, just like mine.

As Jo says, nobody would chose this life and I did everything I could to avoid it.

ETC: the area now highlighted in bold in Para 2: should read the other way round, i.e. scoring lower for mental and emotional impact but higher on fatigue, pain etc with 10 being the worst.

 

Thanks for the extra coding information. I’ve just come back to this one and I think it’s so important and I’m fascinated at trying to unpick what’s going on.

I’m a layperson to coding but think there are some on here who know more. However I’ve worked out enough to know it’s important in where funding goes and figures for who has what

Im unsurprised but unimpressed at the patient-initiated contact but that’s useful insight re who appears in any figures claiming recovery and wondering if they assume people who don’t contact aren’t ill anymore.

brain tired today but whirring a bit at re-reading all of this