ME/CFS services in the United Kingdom

Juenot said:
Most services ie pain service or ME /CSF do not diagnose in my e perience. The diagnosis is very often an elimination of pathalogical diagnosable disease. My understanding is there is yet to be an absolute accessible diagnostic tool for CSF/ME/FM and other functional disorders.
I work for a pain service and I have seen pts make amazing changes in their lives and benefit hugely from our service. Reducing opiate intake where possible seems to be very important. But other pts struggle and the benefits are not so striking. I think the severity of the disease is sometbing that needs to be taken into account. My understanding is that movement is important if its very gentle. Lets face it the body is built to move. Not moving increases stiffness and pain.
Lifestyle can absolutely affect anyones health. We all need to take note of that. However I am convinced there will be a diagnosis and true recognition of these diseases. In the same way MS has been recognised first in 1868 by Charcot as a collection of symptoms and the 2010 using Poser and Mcdonalds methids of diagnosis. But look how long that has taken. There are better diagnostic tools available now but somehow there are still gaps in knowledge.
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I think the issue here is that many non-ME-specific services (e.g., pain clinics or rheumatology clinics which only sometimes deal with ME cases) don't feel confident in diagnosing patients.

But in my experience, dedicated services typically feel they can recognise 'well defined' cases using clinical criteria and a thorough work up (in conjunction with proper exclusionary testing).

I know many ME/CFS specialist centres *do* diagnose, and they use a combination of specialists and therapists to do this. BACME guidance mentions this and which criteria are most often used (Fukuda and NICE 2007).

This probably creates a bottleneck in services, where everyone has to go to one of a limited number of services for diagnosis, which thus delays everything. But people are getting their diagnoses from somewhere.

In general, I think it's GPs who are most unlikely to diagnose, since they lack the confidence (this appears to be backed up by studies and surveys alike). But I do take the general point that those who don't deal exclusively with ME/CFS may prefer not to diagnose if they can.
 
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Sentinel Healthcare lands at PSP with health training hub boost for Devon
A training centre specifically aimed at honing the skills of Doctors, Pharmacists, Optometrists, Dentists and staff from across Devon is being given an extra shot in the arm following its recent expansion at Plymouth Science Park.
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Alongside the Devon Training Hub, Sentinel Healthcare provides a broad range of additional services which are connected to patient wellbeing across Devon, from standard and enhanced DBS checks through to private healthcare.
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Sentinel Healthcare also provides the only Chronic Fatigue Syndrome (CFS) service for West Devon.

Using a multi-disciplinary team from a variety of backgrounds, including GPs, consultants and psychologists, Sentinel Healthcare has helped to alleviate CFS symptoms for more than 600 patients in the past year alone.
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https://www.theplymouthdaily.co.uk/...are-lands-psp-health-training-hub-boost-devon

(anyone have any more info/experience of this service?)
 
The MEAction survey had a few respondents (8) but not all answered all the questions on the service so the data is not particularly useful for drawing one conclusion of another. However, it is here if you want to have a look. Select the Pymouth service from the dropdown on the top left. Best viewed in Chrome on a laptop or a PC. If you have any difficulties with it drop me a message.
https://www.meaction.net/2019/12/05/how-did-your-local-me-service-perform/
 
Sly Saint said:
Sentinel Healthcare lands at PSP with health training hub boost for Devon



https://www.theplymouthdaily.co.uk/...are-lands-psp-health-training-hub-boost-devon

(anyone have any more info/experience of this service?)
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Appears to be this: https://www.sentinelhealthcare.co.uk/patients/chronic-fatigue-syndrome-me/.

Doesn't look competent, mostly aspiration fluff:
The treatment may focus on the following goals:

To restore a balance between rest and activity in a multi-tasking lifestyle
To improve sleep patterns and dietary intake
To overcome difficulties with concentration, memory and information processing
To develop problem solving and goal setting techniques
To increase participation in valued social activity
To provide advice related to employment or education
To develop strategies to prevent relapse

However this is tailored to individual needs for each patient
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HOW CAN I ACCESS THIS SERVICE?

Our service is commissioned to provide the treatment strategies outlined in the N.I.C.E. guidelines for this condition. The treatment pathway is delivered as follows:


Via a group programme over 11 sessions

Alternatively it may be more appropriate to offer patients a set number of guided self-help strategies on an individual basis

For a patient who is bedbound or completely housebound, a home assessment can be arranged after liaison with yourself as their G.P.
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Yeah, completely useless fluff: https://mk0sentinelshvb9ngm6.kinsta...8/session-2-effective-rest-and-relaxation.pdf, advises "Effective Rest and Relaxation", which is totally a thing and a "tonic for the body, mind and soul". Totally not a Goop affiliate, though.
 
"we cannot provide you with a cure, but given patience, determination & courage on your part, we can help you to achieve a gradual recovery or at least a partial return to previous activity levels"
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Wow talk about starting the gaslighting early, it's on the first page!
So if the person ends up worse instead, because of your misguided interventions, it's because they don't have patience, determination or courage.

"other symptoms include" 'Post Exertion Exhaustion'. For goodness sake

It's all very patronising in tone. Lots of unnecessary exclamation points. Couldn't face wasting energy on any more of it.
 
Improving sleep....
"if your bed is uncomfortable, change it"
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They really do think we are all as thick as 2 short planks. I mean would it ever have occurred to you that if your bed was uncomfortable you might need to change it so you could sleep better? That's not obvious is it?! For goodness sake, i'd have worked that out aged 4! I am so glad we have these clever people to educate us.

"If you wake during the night needing the toilet try reducing your fluid intake a couple of hrs before bed" It's beyond insulting that they think we cant work out what would be obvious to a 9yr old
 
NelliePledge said:
This popped up in a search I was doing. Salford booklet for their current 6 week PACE light programme. Haven’t read all of it. https://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=43129&type=full&servicetype=Inline
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Yeah, that's a big pile of incompetent garbage, sprinkled with some of the simple advice that preceded the BPS takeover. It's all about thoughts and beliefs and you can aim for total recovery, if you want it. Typical ME-BPS pseudoscience.
 
JemPD said:
Improving sleep....

They really do think we are all as thick as 2 short planks. I mean would it ever have occurred to you that if your bed was uncomfortable you might need to change it so you could sleep better? That's not obvious is it?! For goodness sake, i'd have worked that out aged 4! I am so glad we have these clever people to educate us.

"If you wake during the night needing the toilet try reducing your fluid intake a couple of hrs before bed" It's beyond insulting that they think we cant work out what would be obvious to a 9yr old
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Such wisdom. Much experts. Tens of millions of dollars went into this illness model. :chef's kiss:

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NelliePledge said:
Interesting tweet with letter sent to Sussex CFS Service


This person has had CPET and is prescribed pyrostigmatine ? Mestinon
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That does not make a whole lot of sense to me.
I am wondering who at Imperial is doing this sort of testing, and maybe prescribing?
Anybody any clues?
 
Jonathan Edwards said:
That does not make a whole lot of sense to me.
I am wondering who at Imperial is doing this sort of testing, and maybe prescribing?
Anybody any clues?
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eta:
Dr Luke Howard DPhil FRCP is a consultant respiratory physician who specialises in cardiopulmonary medicine and exercise physiology. He specialises in diseases of the pulmonary circulation, in particular pulmonary hypertension and pulmonary embolism, and through his interest in exercise physiology has specific expertise in unexplained breathlessness. He works in close collaboration with his colleagues in cardiology, rheumatology and haematology to provide a comprehensive assessment of conditions leading to exercise limitation.
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https://www.imperial.nhs.uk/consultant-directory/luke-howard

see also:
Dr Gulammedhi Haji
https://www.imperial.nhs.uk/our-services/cardiology/meet-the-team
 
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