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.
 
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