United Kingdom: North Bristol NHS Trust: ME/CFS clinic

North Bristol NHS Trust: Foundation Phase Online Course

This has appeared today.
It sounds very BPS

But I was intrigued by this statement:

I wasn't aware that the NHS were doing this. A step in the right direction but nowhere far enough, maybe just delaying tactics.
They could just drop the CFS altogether and just say what it is, ME.

https://www.nbt.nhs.uk/our-services...gue-syndromeme/foundation-phase-online-course

 

All communications that I've seen from NICE to do with the guideline review uses ME/CFS, which personally I believe is the most appropriate name to be using at this time, albeit I will tend to use ME as shorthand in non-S4ME communications.

 

Maybe I'm being nit picky but isn't the whole issue with PEM that you cannot manage it, it being you've lost control of the thing by overdoing or because of a bug etc and therefore it manages you. At that point the only managing you should be doing is rest. The idea of activity management is to avoid triggering PEM.

Failing to see the relevance of stress or stress management particularly. I'm not saying getting ME and adapting to living differently with less money and dealing the DWP isn't stressful but, personally, anything that wasn't practical help was just an added burden that took precious resources away from dealing with the issues that were causing stress.

 

I don't now if this is a good thing. Great if they were now thinking about ME as we know it is but if they are just calling it the same as us while using the same old ideas but now making me synonymous with chronic fatigue.

That will work against us and cause even more confusion and distress for us.

They are now talking about PEM but if they can even consider exercise could help they are not talking about what we get and it is just more disinformation that will lead to our GPs misunderstanding us when we try to explain.

I am an easy going person but I really hate these people. They know what they are doing and are just changing what they say to keep there empire going. Like calling gulags education centres.

 

iTrash: it's the same garbage, now online.

How could the world possibly go on without this garbage being made available online? After all it's very important for the jobs program of people who create and supply garbage. Without this modernizing of garbage, those jobs might actually serve a purpose instead, as it's not as if there wasn't huge unmet demand out there that wasn't being extra unmet by the online supplying of astrology for physicians.

Psychics have been online for decades. Really behind the curve on this, folks.

 

I only skimmed it quickly, but I really don't like the way they talk to patients. So much patronising waffle. I'm worried that their move towards vaguer claims means that they're adapting to make criticism more difficult, while the same problems continue.

 

I don’t see how switching CFS/ME to ME/CFS changes anything for the better. U.K. CFS -oxford, Fukuda or NICE criteria isn’t interchangeable with M.E.

 

The 2007 review used CFS/ME. https://www.nice.org.uk/guidance/cg53

 

OK, but I was referring to the current review, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents

 

I've partaken in the Foundation course at NB, in person, during 2019.
It was of limited benefit to me (having lived with ME since 2016) but I can see how it would be helpful to people who are just starting on a 'journey' with ME.

I had a thread on it somewhere, where I recorded my thoughts. I'll see if I can find it. They didn't push GET or CBT in my experience, and reinforced the point that there is something wrong. One of the good aspects of the group session was listening to everyone discuss how it impacted on them, the range of experience was quite vast.

Will it help someone get better, no. Will it give some guidance on activity management, yes. Will it help some people feel vindicated in how they feel, yes. Is it worth doing, depends on the individual.

Could NHS support be much better, YES!

 

Please may I ask @ringding how long for and how many meetings were involved in the course?

From my perspective, at another clinic, in 2014. There would have been no way that I would have been able to attend anything lasting more than an hour. I did, however, have to factor in travelling to the clinic (30 min drive each way), but even that was helped by me stopping at my parents house on the way home to sleep, eat & recover before I drove the rest.

It took me a few years before I realised that even driving to the clinic, had been overdoing it, in those early months.

 

The first lot of these type of courses were part of an expert patient programme. I saw the course and wondered if I should do it. Would it make my GP a little more likely to be sympathetic, would the DWP see it as a positive - a way of demonstrating I wasn't a lazy git and wanted to be well.

The course was at the other end of my county. I checked if there was a closer one, but nope, in my health authority it was a fair distance away.

Then I wanted to check if there were any facilities near by (not a 5 mile hike down various corridors) for a cuppa, was the parking close, loos nearby, seats bearable, somewhere you could lie in a darkened space if it was too much etc. They didn't reply to my enquires.

My consultant reckoned I already knew everything that was outlined and more so it would be a complete waste of time.

 

The foundation course is two 1hr sessions. My wife drove me to each, about 30mins away, but even then it was too much really.

All subsequent sessions, which have been 1 on 1, have been over the phone.

Honestly, if they can provide the support online instead (or as well as) in the future then I think there could be benefits to some.

All based on my own experience of course. Fully understand that others may think otherwise.

 

Thank you, that sounds quite reasonable although 2 weeks running could be quite hard work.

I only asked because the ‘group courses’ laid on at our local Satellite Clinic were for 2 hours at a time (which I thought was quite unreasonable), every 2 weeks for (?) 6 sessions.

Many local people have found it helpful to meet other people but one friend was discharged as ‘too severe’ (with NO other options offered or discussed) after being unable to attend the 2nd session as she was still recovering from the first.

it is very heartening to hear in the past year (I now know of 4 people) that patients are being offered telephone appointments from NB/our Satellite clinic. At last, a step in the right direction. With all the Skype/telephone work being done by doctors during the Coronavirus, we can only hope that more one-to-one support can continue to be offered after the Lockdown has ended.

This all depends on the advice offered, of course.

 

https://www.nbt.nhs.uk/our-services...romeme-service/cfsme-rehabilitation-checklist

10. Are you seeing a therapist who has had success with rehabilitation for people with CFS/ME?
If your therapist doesn't have experience of rehabilitation for people with CFS/ME, then you could ask to see a specialist who has. Or, you could ask your therapist to seek advice and supervision from a specialist therapist.

This checklist is in line with the National Institute for Health and Care Excellence (NICE) guideline for CFS/ME which says that “GET should be delivered only by a suitably trained GET therapist with experience in CFS/ME, under appropriate clinical supervision.”

The guideline goes onto say that, when starting a course of GET, the healthcare professional should:

• assess the person’s current daily activities to determine their baseline
• agree with them a level of additional low-intensity exercise that is sustainable, independent of daily fluctuations in symptoms and does not lead to ‘boom and bust’ cycles; this may be sitting up in bed or brushing hair for people with severe CFS/M.E., or gentle stretches or a slow walk
• encourage them to undertake this exercise for at least five days out of seven, or build up to this level if and when possible
• advise them that this level of exercise may mildly increase symptoms for a few days (for example, a mild to moderate increase in stiffness and fatigue), explain why this may occur and discuss strategies to mitigate it
• offer information on the management of setbacks/ relapses.

At the heart of rehabilitation is an empathic interaction between the person and the therapist which gives rise to the process of building confidence and gently restoring function whilst managing what can often be a very challenging health condition.

References:

1. Gladwell, P.W. et al. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disability and Rehabilitation, 2014. 36(5): p. 387-394.
2. White, P.D. et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet, 2011. 377: p. 823-36.

above was posted on another thread in response to AfME saying that they had not put their name to a new clinic in Scotland that uses almost the exact rehabilitation treatments as this clinic where AfME are very much involved.
They also linked to their documents re their position on GET and yet here this is.

 

Copied from this thread

Mindfulness course available at Bristol CFS/ME clinic

https://www.nbt.nhs.uk/our-services...onic-fatigue-syndromeme-service/mindfulness-3

 

This upsets me so much I felt nauseous reading it. It is the exact opposite of my experience and these people claim to be qualified enough to risk patients' health? I make changes and I feel great. I've got a handle on life, my diet is better, I'm excited. Then a week later (if I am lucky) I am lying in bed wondering how many vitamins are in a packet of tomato flavour crisps and if I have enough strength to open the packet anyway. (Why does all healthy food need preparing or doesn't last long?)

If their process helps people recover they unlikely to have ME. If doing a bit more is working (and some people with ME can do more at times so they reach a plateau higher than before) then I suspect that most ME people I know would already be doing it, not attending a clinic. I have stopped worrying about whether I could be doing some tidying up, say, if I really wanted to because if I was well enough I would have done it without thought. Even after fifty years my mind still thinks I am normal and that looks common to most people I have interacted with over the years. Who wouldn't want to go for a short walk in the park in beautiful weather?

They are assuming it is fear of a mild increase in symptoms that is stopping their patients. We are right back at the fearful patient who is too much of a wimp to risk a bit pain so become deconditioned and caught in a vicious cycle. Exactly what was disproven in the PACE trial.

I wonder if it is any coincidence that MS was at Edinburgh University and his fanboy Stone of FND fame is still there?

 

I think the idea is to teach people to be more "in the moment" and learn acceptance. It has been shown to be helpful in depression and pain management (Jon Kabat-Zinn has been credited for introducing it to the west and using it in this field, with good results)

Personally i would feel altogether more accepting if i knew that medical science was doing everything possible to help me get better and then mindfulness was an add on, as opposed to being mostly all we are offered.

slightly off topic, but I get really annoyed with this one size fits all approach for CBT and mindfulness with no evidence base - it is not a magic band aid for everything; they are both helpful for *specific* conditions, not this scattergun approach.