Leeds and West Yorkshire CFS/ME clinic

[Purple]

I love these two paragraphs from the Leeds brochure:

"There is no specific single medical treatment for CFS/ME and although many different treatments have been suggested few have withstood rigorous trials.

We believe in patients being central to the therapy process and we focus on supporting patients to apply strategies which they can use to help themselves."

They boil down to:
1st paragraph: we haven't got a clue what ME is or how to treat it.
2nd paragraph: we just let patients shift for themselves.

"There is no specific single medical treatment for CFS/ME and although many different treatments have been suggested few have withstood rigorous trials."

Seriously? They say this in writing? And with a straight face? (presumably)

The only repeated trials (hesitating here to say 'rigorous') have been into GET and CBT and they showed these 'therapies' to be a big fat failure. Nothing else has been tested rigorously and repeatedly in big enough randomised controlled double-blinded trials - so they cannot say other treatments didn't withstand rigorous trials.

The ME Analysis videos are a good reminder of what a failure the PACE trial was (and GET/CBT in general) and good to be aware of before considering going to any UK 'chronic fatigue' unit: https://www.youtube.com/user/MEAnalysis/videos?sort=da&view=0&flow=grid

 

[worldbackwards]

Dr Akagi did say I shouldn't read into her title as she works with a full team.

Oh, they all say that...

 

[Valentijn]

Oh, they all say that...

Yeah, my personal experience and general impression of these types of clinics is that the entire team is ultimately focused on psychological theories and therapies. Hence the physiotherapist, relaxation therapist, ergotherapist, "specialist", and psychologist at the clinic I went to were all focused on encouraging me to avoid real doctors or mobility aids, and to magically become more active.

Instead of one idiot brainwashing you, you get a diverse team of idiots working together to brainwash you.

 

[mermaid]

I used to be in touch with a woman who went in to their inpatient clinic there, having been pressurised to go there as a way of improving her symptoms. She hated it there especially when they decided to rename her condition as MUPS (medically unexplained physical symptoms).

Each day she was encouraged to do more than she felt able to cope with. In the end she effectively lied to them to get out of the place - saying that she had improved and would continue with their approach at home, whilst having no intention at all of doing so.

 

[Sidereal]

In the end she effectively lied to them to get out of the place - saying that she had improved and would continue with their approach at home, whilst having no intention at all of doing so.

She was lucky that they believed her and let her out.

 

[themjay]

You are making a mistake going anywhere near the place if you have ME.
For my curtailed version of the experience see here:

http://carersfight.blogspot.co.uk/2015/02/dont-criticize-what-you-dont-understand.html

and here for my experience of ME

http://carersfight.blogspot.co.uk/2015/01/day-release-one-mans-experience-of.html

Also bear in mind they now have no immunologist - he has set himself up as a private "fatigue" specialist, despite not believing in ME. Also many of the original staff are gone as part of funding cuts.
I am too ill today to type much, but my GP had a very difficult and evasive conversation with the Dr. you mentioned. I was seen by her. She kept mentioning a "holistic" approach bit when my GP pushed her she admitted this meant largely psychiatry. She also claims that ME can be cured if you just approach their treatment with an open mind - I wonder when she collect her Nobel prize...

BEWARE

 

[MeSci]

She probably doesn't know what toxins are
Trust me they'll get to your childhood, put money on it, I'll be darned if they don't

Oh heck just call me Mrs Negative.. If you're happy going there go for it, don't let me put you off.

Maybe these training videos for UK GPs will do that for you.

 

[MeSci]

Based on http://eprints.whiterose.ac.uk/1224/1/house2.pdf it looks like she takes it for granted that conversion disorder exists and is fairly common. One of the sources she cites is Simon Wessely

She's definitely a fan of CBT for CFS, and published a paper on it: http://www.ghpjournal.com/article/S0163-8343(01)00154-2/abstract

She was also an "independent" assessor of PACE trial safety data.

Overall, she's looking like a pretty well-entrenched member of the psychosomatic lobby. Though she probably does have good intentions, and likely honestly believes that illness-denial CBT will be helpful.

In case anyone is not au fait with the PACE fiasco, try this thread.

 

[MeSci]

If I had my time over again, this is exactly what I would do. Get those outrageous and unsubstantiated claims on tape. Maybe at my next relapse? (Assuming I get out of the present one.)

You can get small voice recorders very cheap, but you may have to pay more for one which 'stamps' recordings with the time and date.

 

[MeSci]

I used to be in touch with a woman who went in to their inpatient clinic there, having been pressurised to go there as a way of improving her symptoms. She hated it there especially when they decided to rename her condition as MUPS (medically unexplained physical symptoms).

Each day she was encouraged to do more than she felt able to cope with. In the end she effectively lied to them to get out of the place - saying that she had improved and would continue with their approach at home, whilst having no intention at all of doing so.

I bet some of the staff can't resist referring to us as 'muppets' based on that stupid term 'MUPS'.

 

[MeSci]

She was lucky that they believed her and let her out.

I don't think it's an in-patient unit, is it? I think that adults with ME are relatively safe in that regard. It's under-age sufferers who are in danger, and once they are in psychiatric 'care' it can be difficult or impossible to escape, as witness this mother and daughter in the UK (the daughter had a nervous breakdown after being taken away from her mother) and poor Karina in Denmark who appears to have been driven mad by her incarceration.

 

[Valentijn]

I bet some of the staff can't resist referring to us as 'muppets' based on that stupid term 'MUPS'.

A better term to use for the psychosomatic theorists who thinks MUPS exists and is a conversion disorder ... in fact, I really like it!

 

[Sidereal]

I used to be in touch with a woman who went in to their inpatient clinic there, having been pressurised to go there as a way of improving her symptoms.

@MeSci

 

[eafw]

I don't think it's an in-patient unit, is it?

There is an inpatient unit - the infamous ward 40 - linked to the Leeds CFS service. Both run by psychiatrists, and same policy of relabeling CFS/ME as anxiety/neurasthenia and similar. It doesn't have a good reputation amongst patients who know about it or have been there.


ETA: to clarify for those not familiar: ward 40 at LGI also call themselves "The Yorkshire Centre For Psychological Medicine", see link in themjay's post below.

 

[themjay]

I posted this on my facebook page
http://www.leedspft.nhs.uk/our_services/YPCM
and other groups and received multiple disturbing testimony from patients who used such term as "bullying" "torture", forced medication and threats to have children removed unless complying with "treatment"

 

[justy]

I don't think it's an in-patient unit, is it? I think that adults with ME are relatively safe in that regard. It's under-age sufferers who are in danger, and once they are in psychiatric 'care' it can be difficult or impossible to escape, as witness this mother and daughter in the UK (the daughter had a nervous breakdown after being taken away from her mother) and poor Karina in Denmark who appears to have been driven mad by her incarceration.

Adults with very severe M.E in the UK are really not 'safe in that regard' im sorry to say. I know someone who was sectioned and kept in a psychiatric unit, just like Sophia Mirza. I know of at least one other very sick patient who has been forcibly detained in a psychiatric unit in the UK for at least a couple of years now

 

[justy]

Personally I wouldn't get involved with any British CFS service under any circumstances.

You have said on another thread that most friends, forum members and health worker acquaintances you have spoken have strongly suggested Lyme to you, you even remember a bite and spreading rash. Going to some mumbo jumbo CBT GET clinic is not going to help cure a chronic bacterial infection, if that is what you have. The longer you leave it for untreated (if it is Lyme for example) then the harder it will be to treat.

Sorry to be so blunt, but I have been following your posts with interest and the sooner anyone who is recently diagnosed, and for that matter also has mild CFS gets to see a proper M.E Dr, the sooner they can start to make a recovery. I wish I hadn't wasted so many years, getting worse along the way so that now, even though I have a great Dr I cant do the treatments.

 

[MeSci]

@MeSci

Ah - the short attention span of my ME brain...

 

[MeSci]

I posted this on my facebook page
http://www.leedspft.nhs.uk/our_services/YPCM
and other groups and received multiple disturbing testimony from patients who used such term as "bullying" "torture", forced medication and threats to have children removed unless complying with "treatment"

Yikes. Looks like it would be a nice place - without the staff - from the photo.

 

[MeSci]

Adults with very severe M.E in the UK are really not 'safe in that regard' im sorry to say. I know someone who was sectioned and kept in a psychiatric unit, just like Sophia Mirza. I know of at least one other very sick patient who has been forcibly detained in a psychiatric unit in the UK for at least a couple of years now

Dreadful. I think that it happens more often to under-age sufferers though, doesn't it?