Leeds and West Yorkshire CFS/ME clinic

[woollypigs]

Hello

Have any of you been to, and heard about, Leeds and West Yorkshire CFS/ME clinic?

I been there to meet the Senior Nurse and the Consultant Liaison Psychiatrist, Dr. Akagi.

They both want me to do individual sessions and think I got mild CFS/ME.

/woolly

 

[aquariusgirl]

A psychiatrist?

 

[MeSci]

Hello

Have any of you been to, and heard about, Leeds and West Yorkshire CFS/ME clinic?

I been there to meet the Senior Nurse and the Consultant Liaison Psychiatrist, Dr. Akagi.

They both want me to do individual sessions and think I got mild CFS/ME.

/woolly

I understand that Leeds have a bad name, offering CBT, graded exercise and other crass stuff, like most UK clinics, as it is what NICE recommend. Here is their downloadable leaflet. I personally regard it as a waste of energy. You will find much better ideas for self-treatment here. In my opinion.

 

[A.B.]

It's one of those clinics where CFS is treated as delusional belief to have an illness resembling CFS. They think that once you stop believing to be ill and just exercise a bit more that you'll stop feeling sick.

 

[aquariusgirl]

I have to say I did have anxiety....but it seems to be in part a result of a zinc deficiency....I have heard that anti anxiety meds are becoming a first line treatment for this illness.. but I think it's just a by product of other metabolic problems. YMMV.

 

[aquariusgirl]

You know the Brits on this forum should consider making undercover videos of their appointments & posting them to you tube for posterity. The current treatment they are being offered is very misguided.

 

[ukxmrv]

I have been to a couple of CFS clinics in the UK and this is one I would not choose to attend.

My reason would be that I have heard bad experiences from patients who have been there and in my case their program doesn't help me (I've done the same things elsewhere).

It really depends what you need to help treat your symptoms and what your expectations are .

Some people do find advice on pacing useful and grateful to find someone to talk to. They are not interested in treatments based on published research or experimental treatments from someone with years of experience or even seeing a medical doctor who specialises in this or having other conditions ruled out in a thorough manner by someone who knows what they are.

My guess would be that if you are posting to this group you would need and expect more than that?

 

[woollypigs]

@aquariusgirl you are not the only one questioning this.

http://www.meassociation.org.uk/201...appointed-new-clinical-lead-6-september-2012/

Read the comment.

@ukxmrv I'm only asking because I have never been there. And don't know what to expect regarding help from NHS and how to deal with CFS.

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

Which was proved by them, when I gave them more information via email. Which my GP didn't want to read. As they called back the very next day and suggested that I came in again.

They were also the first specialist/doctors who asked questions about the past. Others were only interested in the now, not how I got to the now.

 

[maryb]

Ahh not to be negative, but psychs have a way of blaming all ills on the past, sorry if its not what you want to hear.

 

[MeSci]

I have to say I did have anxiety....but it seems to be in part a result of a zinc deficiency....I have heard that anti anxiety meds are becoming a first line treatment for this illness.. but I think it's just a by product of other metabolic problems. YMMV.

I fixed my lifelong anxiety with a leaky-gut regime and supplements. I didn't get that from a clinic - I got it from scientific papers and tips from people here for improving ME symptoms, and it improved lots more besides.

 

[woollypigs]

Ahh not to be negative, but psychs have a way of blaming all ills on the past, sorry if its not what you want to hear.

Hehe, she didn't go four decades back blamed it on my lack of Lego

Only back to shortly before it all stated.

 

[MeSci]

Hehe, she didn't go four decades back blamed it on my lack of Lego

Only back to shortly before it all stated.

Can we lay bets that she is not interested in viruses, toxins, etc?

 

[woollypigs]

Yup viruses she is sure it is not, didn't talk about toxins.

 

[maryb]

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.

 

[Valentijn]

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

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.

 

[Aurator]

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.

 

[wastwater]

I think they focus mainly on deconditioning rehabilitation

 

[eafw]

This clinic, like most in the UK considers ME=CFS=anxiety disorder and is based in a mental health unit. They will treat you on that basis: CBT, GET and anti-anxiety meds if they can talk you into that too.

You could, if you are careful, get something out of it but you would need to go in with a clear head and a plan.

Bear in mind the way the NHS deal with us is that they are quite prepared to be dishonest and pretend it's just some irrelevant coincindence that a psych is charge as it's all multidisciplinary, whereas the reality is that the psych approach is the entire basis of what they do.

 

[woollypigs]

Thanks all, I will go in with a clear head and see what their plan is.

Though it sounds like I gotta stick with you lot* and come up with a plan.

* yup, you brilliant and very helpful lot

 

[Scarecrow]

You know the Brits on this forum should consider making undercover videos of their appointments & posting them to you tube for posterity. The current treatment they are being offered is very misguided.

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.)