United Kingdom: Leeds and York Partnership - CFS centre

I find this whole non medical approach patronising infantilising. Colour in your diaries, let’s pretend It’s all about “ management “

we are not lucky the “cfsme” service is under the psychiatric department in Yorkshire after previously immunology. Services without physicians cut the potential for them being research clinicians like bansal and newton are /were and I bet that the psychiatrist isn’t attending biomedical research conferences either.

the most irritating part is the constant reference to CFS when most patients won’t use that name. How about respecting that?
 
The first video where a patient describes his experience seems to be saying he has learned useful techniques to manage his illness, but he gives no idea whether he is still ill. I wish him well, but he gives a false picture suggesting a series of group sessions on managing symptoms can magically enable people to return to full time work/study.

I'm sure the therapists in the second video mean well, but while they still keep describing the main problem as fatigue, I find it difficult to take seriously. And as for suggesting it's a good thing the clinic consultant is a psychiatrist because some patients also have mental health problems, words fail me. If that made any sense, every medical clinic should be run by a psychiatrist, which is clearly nonsense. It wasn't clear what sort of management advice they give. The physio seemed very focused on increasing activity.
 
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Trish said:
The first video where a patient describes his experience seems to be saying he has learned useful techniques to manage his illness, but he gives no idea whether he is still ill. I wish him well, but he gives a false picture suggesting a series of group sessions on managing symptoms can magically enable people to return to full time work/study.

I'm sure the therapists in the second video mean well, but while they still keep describing the main problem as fatigue, I find it difficult to take seriously. And as for suggesting it's a good thing to the clinic consultant is a psychiatrist because some patients also have mental health problems, words fail me. If that made any sense, every medical clinic should be run by a psychiatrist, which is clearly nonsense. It wasn't clear what sort of management advice they give. The physio seemed very focused on increasing activity.
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He said he's doing a full-time PhD which would be consistent with being well or perhaps having the most mildest form of ME/CFS. We don't know the story - it's possible he's mentioned some mental health issues when first enrolling in the service. I know from the personal experience of some friends that going to live abroad can be a stressor.

I have no doubt some of the patients using this service do get better. But what is important is the rate and how it compares with not using the service. What annoys me is there is never any detail. It's all very beaurocratic and wishy-washy.
 
I also think the U.K. nhs approach is part of the reason why the still functioning - working , studying socialising and their family and friends aren’t donating to research or joining uk charities, only around 15, 000 are in the main 2, contrasting to 40,000 in ms society with half numbers affected (obviously many potential reasons for this, including maintaining support)

we have a huge problem in uk with raising about £2m (max) per year which is equivalent to 20, 000 giving £100 per year average including membership fees. When there’s an estimate of 150-250 000 affected , many with some sort of diagnosis, who aren’t joining or donating and neither are their connected others there’s some multiple causes surely .
But if your serious illness, when you are still active with a wage potentially, Is being called CFS/CF & presented& managed in these terms, is that surprising?
 
Cinders66 said:
I also think the U.K. nhs approach is part of the reason why the still functioning - working , studying socialising and their family and friends aren’t donating to research or joining uk charities, only around 15, 000 are in the main 2, contrasting to 40,000 in ms society with half numbers affected (obviously many potential reasons for this, including maintaining support)

we have a huge problem in uk with raising about £2m (max) per year which is equivalent to 20, 000 giving £100 per year average including membership fees. When there’s an estimate of 150-250 000 affected , many with some sort of diagnosis, who aren’t joining or donating and neither are their connected others there’s some multiple causes surely .
But if your serious illness, when you are still active with a wage potentially, Is being called CFS/CF & presented& managed in these terms, is that surprising?
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Personally, I think it's because patients are a) not getting support and benefits at the same rate as illnesses like MS, so we're more likely to be skint; b) spending on our money on unproven treatments because of a lack of treatments or even proper medical advice; c) facing stigma around ME, so that lots of people don't want to draw attention to themselves by doing public fundraising; and d) have a higher rate of extreme disability compared to illnesses with proper treatments, even if they do want to fundraise.

What we need is big centralised funding of the sort governments and the EU give/gave. That requires a degree of advocacy and political clout, though, which we don't have yet. We're just not visible enough.
 
In the first video @3:10 he mentions evidence-based support. I have to take exception to this. I live near Leeds and was told (without any evidence) that my illness was somatization. I was offered a place at Leeds, after I refused...

Will finish this post tomorrow as I can't type any more.

ETA: ...they sectioned me and told me without evidence that my symptoms were a delusion. They made my condition permanently worse and refused to acknowledge what happened, in fact they claimed my incarceration was a success. My GP refuses to believe me and claims the best "evidence based" treatment for ME is GET.
 
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wastwater said:

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Ohhh so naughty. And sinister having the biopsychosocial screenshot crowbarred in so many times. It feels like an obvious PR to try and cover for 'why are we still offering the same old thing, and how can we rebrand it as 'no, it's not that old thing''. Just try and come across like gentle caring and 'good intentions' (we just want to help) people as the brief hey.

Using the old 'yuppie flu' as a distraction fallacy, as if by stigma that is what is meant - and not the biopsychosocial model they do being not a medical model but an ideology that is stigma/bigotry.

Claiming they are lucky to have a psychiatrist and 'accounting for that' throughout both videos with excuses as to why that's a supposedly apparently normal and useful thing - and making no note at all as to the fact that is instead of a medical specialist.

And yes, difficult to say as I'm sure there are lots who have CFS and do persuade themselves of what is told to them, many reasons that might be their story, but the patient's voice sounds very scripted to precisely what they wanted to be said. To use the phrase the only place that is evidence-based for example.

Why on earth is it that the profession is so allergic to moving with science? and thinks that they can bend the world around their own needs and beliefs? You shouldn't be marketing your product in order to claim it is OK for someone else with something you know nothing about instead of following the science if you are evidence-based or have good intentions (which to me means that you care about the consequences of your treatment, which we know these places have tended not to for so, so long, and has been made clear when the PACE re-analysis was rejected by them as was the harm patients reported in surveys - if you carry on regardless without acknowledging or checking for harm that is not good intentions).

A new low?
 
Cinders66 said:
I also think the U.K. nhs approach is part of the reason why the still functioning - working , studying socialising and their family and friends aren’t donating to research or joining uk charities, only around 15, 000 are in the main 2, contrasting to 40,000 in ms society with half numbers affected (obviously many potential reasons for this, including maintaining support)

we have a huge problem in uk with raising about £2m (max) per year which is equivalent to 20, 000 giving £100 per year average including membership fees. When there’s an estimate of 150-250 000 affected , many with some sort of diagnosis, who aren’t joining or donating and neither are their connected others there’s some multiple causes surely .
But if your serious illness, when you are still active with a wage potentially, Is being called CFS/CF & presented& managed in these terms, is that surprising?
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Two big reasons:
1. the CFS description was such a weird hypochondria mixed with 'exercise avoidance anxiety' along with actually prescribed in the guidelines orders to 'not investigate' I'd suspect many think they have something else that simply has never been 'gotten to the bottom of'.
2. the world they were thrust into is so murky to find out what is truth and who can be trusted - which research project etc? I don't know whether decodeME type things have crowdfunding/donation figures but suspect only that type of thing would be seen as a slamdunk likelihood of not inadvertently sponsoring the wrong thing

And yes a lot who have been diagnosed spend many years diving right into the old 'I just need stress relief' rabbit hole and living it, maybe because they actually have something else (Fukada criteria), maybe because of their situation.

Remember everyone has a 'role' - in various groups, workplaces etc that changes. Exertion is the issue - if pretending to have something that is 'biopsychosocial' means you get less abuse because noone is going to give you properly less exertion and those surrounding you have been swept up by all this tosh (this video says they get the family in) you aren't going to have spare funds yourself or an ability to step out of the Truman Show. Or no spare energy to find such places worthy of donation.

Like anything else in life we can talk about the ideal, but when things are as bad and warped as they've been allowed to be by all this survival-mode means making yourself only slightly worse and 'eating stigma' vs railing against everyone around you and being abandoned where there is no safety net. I'm sure the BPS approach makes people worse, they've just cleverly ensured that the stick most who won't 'get with the programme' receive thanks to their propaganda is an even faster way down. The only ways people cope with that dystopia? Well yes that includes playing your role and obedience/not rocking the boat. I'm sure I'm not the only one who has read enough articles where someone got sectioned because 'they were looking at other treatments, and not doing their homework' as said by someone convinced by the NHS bumpff it was 'a little bit mental health', people who are often quite intently observed by others who've been convinced their symptoms are some sort of 'manifestation'. People don't recover with this, those around them take out that frustration and being fed up with the weighing anchor on the patient and the BPS has directed this in anticipation to certain avenues being seen as 'misbehaviour'. Whether that is your employer or family, friends, GP or other services many are on very shaky ground with their lives on a daily basis - due to all of this.
 
Recently updated page

ME/CFS Service​

Welcome to the Leeds and West Yorkshire ME/CFS Service, which is a specialist NHS service for people with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS).​

We are currently carrying out our implementation of the New NICE guidance across the service.

Healthcare professionals can now download our newly updated primary care booklet – please scroll down to the Professional resources section on this page.

Still experiencing fatigue after a recent infection?​

We are keen to support referrers, patients and other services by sharing useful links to information on post-Covid recovery and rehabilitation.

Post-viral fatigue is recognised to sometimes last for many months after the initial infection but, in the majority of cases, people make a full recovery. A diagnosis of ME/CFS is only considered if there is evidence of Post-Exertional Malaise as well as multiple additional new symptoms alongside the fatigue such as cognitive symptoms, sleep changes and orthostatic problems and that the symptoms have persisted for over three months in a way which is significantly affecting day to day life.

We therefore encourage good self-management in the meantime along with active review so referral can be considered if the symptoms persist and are interfering with daily activities three months after the initial infection.

We are keen that patients receive appropriate rehabilitation advice regarding recovery from infection. Activity needs to be done in small amounts balanced with rest periods at a level that doesn’t cause an escalation in fatigue. Trying to keep to good routines with eating and sleeping is helpful. It is also important that over exertion mentally or physically is avoided as this can perpetuate or escalate a fatigue condition so patients will often need to be supported during the time that they will have to reduce their daily activities. This may include prolonged periods off work or studies or adaptations being made to take account of the fatigue and the need for regular rest periods.
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ME/CFS Service - Our Services

www.leedsandyorkpft.nhs.uk www.leedsandyorkpft.nhs.uk
 
I think they reserve the term mecfs for people who are expected to recover after viral illness by slowly getting back to activity,I don’t think they use the term in the same way as people with the condition ie me vs cfs and the differential category for people with a disease ie no mecfs diagnosis
 
The second video which was posted at the beginning of this thread is unavailable. I know this is a long shot after 5 years, but does anyone have any recollection about what it was?
 
Sly Saint said:
Recently updated page

ME/CFS Service - Our Services

www.leedsandyorkpft.nhs.uk www.leedsandyorkpft.nhs.uk
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I find it terrifying that it seems people like those behind the BMJ article are clearly trying to lobby for this to be where those who are severe or very severe get sent.

The fact that there is not even the self-awareness or humility or level of care for people to think there needs to be a proper overhaul of staff in some of these most problematic organisations - not to the 'waiting contender, who always wanted to do something with a similar ideology' but to proper fresh, only was there in order to observe and learn types who have the right attitude, well it says it all to me. Anyone who calls themselves an expert in these organisations whilst all that they are demonstrating by saying that is an inability to understand what external validity is or what the definition of the illness is should be excluded. But that isn't happenning. There is no humility or objectivity.

The biggest failure of a place with completely the wrong angle and so un self-aware that they don't even acknowledge that their 'knowledge' is skewed by both the sample that got sent there and the power they held over them - only way to get out is to say you are 'feeling better' so if you are getting worse that would be the only path to survival.

This abuse of the term mental health and weaponising powers that are not at all due to said departments or staff needs to end. And yet they are lobbying explicitly for this ...

And yet we've people allowing those who are most ill to be siphoned off and we still aren't all as a community hammering home that the full-spectrum is indeed the same illness just people who have been over-exerted and over-exerted often until they get to that state, and laypersons get away with being misled to ease their cognitive dissonance that those people 'must have something else' when it doesn't apparently therefore add up that they've been told CFS is 'a bit of fatigue, maybe a bit more than when we all get tired but still' and then we've got these people dying

I think as a community we need to do some self-analysis of the areas where we can input into things to see how they will play into this big picture and how it lets down both the severe and very severe (and anyone with ME/CFS can end up there, particularly with a run of misfortune which includes coming across the wrong people/professionals - I'll be honest too many I come across distance themselves still, and very much do not properly seek their voice but think they know better and can assume 'they know all about it' then sanitise the nonsense with this not polite 'your case must be unusual' crud).

It doesn't feel great to have to talk to these people but we do. And we also absolutely need to look at any materials whether they are ours or other people's and any plans and prioritise this worst case scenario end of things. So that all of the community understand that it could be them, that it is the illness, and that there isn't anything particularly exceptional about the pwme but it is the system - horrific as it is whilst they also have a lot on their plate and don't feel safe either.

Unless we are all properly standing together and akcnowledging even those milder are at risk of being buried under something that removes their autonomy, freedom, choice over their own body and voice and that the same happens at the more severe end justified by this nonsense it isn't the same thing or 'just trying to help' by doing more of the same that made that person go from mild to severe in the first place then we are just being divided as a tactic.
 
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