Leeds NHS M.E/CFS clinic

[Valentijn]

@tandrsc - I think this blog post discusses the clinic you're attending: http://velo-gubbed-legs.blogspot.nl/2013/02/dissecting-edinburgh-dissecting-nonsense.html . Some of the info there might be useful. The clinic is part of the Department of Clinical Psychology.

Links from the clinic itself, describing it as using CBT, and graded activity, as well being based on the biopsychosocial school of thought (which believes in entirely non-biological perpetuation of ME/CFS):
www.refhelp.scot.nhs.uk/dmdocuments/ME-CFS/Doctors%20Information%20Sheet%20AAH%20Final%20Version1.pdf
www.refhelp.scot.nhs.uk/dmdocuments/ME-CFS/Patient%20Information%20Sheet%20AAH%20Final%20Version%202.pdf

Sorry.

 

[meandthecat]

When I used the Bath ME clinic aout 6 yrs ago, I felt as if I had fallen down the rabbit hole. I was new to this and naive and argued forcefully that I needed treatment for an organic disease. They obviously did not agree and I left with a few choice phrases.

A work collegue who has just been diagnosed with CFS has gone there and little has changed.
They still remember me!!!!!!!! High fives.
They seem more polished, more handouts but still the same lack of intellectual rigour and bankrupt ideology.

It feels like having fallen in with a cult, when reading the handouts or talking with doctors. They seem to have the impression that they are possessed of 'Higher' knowledge when in fact they have narrowed their vision to exclude anything that might not fit.

They seem to mean well but as my mum used to say 'If wishes were dishes they'd all be done'

 

[tandrsc]

@Valentijn - I read this info before going to the clinic so was dubious - no need to apologise

When I voiced my concern about CBT/GET in my first session, the woman said 'hm, that's not really what we do here' and she was right.

They gave me a handout entitled 'What is ME/CFS', here is a quote from it:

"Our current understanding is that the immune system, nervous system and possibly the endocrine system of the body may be involved in ME-CFS. It is possible that the potential to develop ME-CFS may be partly connected with our genetic makeup. ... ME-CFS is not a psychological condition, but what we think and how we respond physically in this situation can influence the course of the illness in a helpful or an unhelpful way."

The physio was even aware of the studies that have shown that our muscles behave differently/wrongly during and after exercise.

 

[Valentijn]

"Our current understanding is that the immune system, nervous system and possibly the endocrine system of the body may be involved in ME-CFS. It is possible that the potential to develop ME-CFS may be partly connected with our genetic makeup. ... ME-CFS is not a psychological condition, but what we think and how we respond physically in this situation can influence the course of the illness in a helpful or an unhelpful way."

Yes, they believe that the trigger might be biological ... and then it's perpetuated by thinking we're ill when we aren't, and any physical symptoms are either psychosomatic or the result of deconditioning.

How on earth would "what we think" affect the disease, otherwise?

 

[tandrsc]

How on earth would "what we think" affect the disease, otherwise?

I took this to mean 'acceptance' and to realise that the illness needs to be managed instead of trying to rush around like before. The realisation that pacing is necessary and to stop feeling guilty about not being able to do stuff.

 

[MeSci]

I did once ask my gp outright to simply lay his cards on the table and tell me whether he believed ME is a psychological illness or an organic disease.

He refused to answer, kept sitting on the fence.

That was enough to answer my question, but he could have saved me the effort of having to listen to his speil by simply being honest.

Not sure re the Scottish version, but the NHS Constitution for England downloadable from here says under the heading:

NHS values Patients, public and staff have helped develop this expression of values that inspire passion in the NHS and that should underpin everything it does. Individual organisations will develop and build upon these values, tailoring them to their local needs. The NHS values provide common ground for co-operation to achieve shared aspirations, at all levels of the NHS.

Respect and dignity. We value every person – whether patient, their families or carers, or staff – as an individual, respect their aspirations and commitments in life, and seek to understand their priorities, needs, abilities and limits. We take what others have to say seriously. We are honest and open about our point of view and what we can and cannot do.

So it appears that many health professionals, and especially in their dealings with ME patients, are contravening the constitution.

I think that anyone in England who needs to know what a health professional's view is, or what a clinic's practices and policies are, should refer to the constitution and demand the answer in writing.

 

[MeSci]

BTW I've heard bad things about the Leeds clinic too. IIRC (and I had trouble as usual recalling that abbreviation correctly ) it was OK until it was taken over or changed in some way. I may have got that slightly wrong though.

 

[bertiedog]

@themjay

shocking - and people are saying things have moved on - get real folks this is what is happening in the NHS NOW

Sorry to go a bit off topic but there is some relevance to what you have said above. Last week I badly damaged my knee when a large dog smashed into it. I was in agony for days especially at night in bed when I go to move it slightly I had to go to A & E at Margate Kent. Naturally it has very badly affected my ME/CFS symptoms because I haven't been able to sleep properly at all plus all the pain. I have felt very ill in myself and exhaustion every day.

I saw a couple of Nurse/Practioners and also a doctor who has ordered an MRI because nothing showed up on XRay. The following day I saw a Consultant at the Fracture clinc. I kept mentioning that in addition to the terrible pain in my knee that the muscles on both legs were so tight and sore because I had ME/CFS and it was being aggravated by not being able to walk properly.

All of them completely ignored the ME/CFS like it doesn't exist and that I hadn't mentioned it, in fact one of the nurses mentioned something about my MS! Naturally I quickly corrected her

To cap it all the Consultant said he would order the MRI but he thought it was just bruising. The reason he was ordering the MRI is because I have been on steroids for 10 years not understanding I have never taken more than a physiological dose and ignoring that in front of him on the computer was my XRay showing lovely strong bones. Because I am 65 years old he is jumping to the conclusion that it is degenerative plus the effect of the steroid. This means he did not listen to me, I have never had a problem with my knee before this accident. He said there was a chance it was a tear to the cartilage and I think this is highly likely because of the severe pain I get on any slight movement side to side. However he made it clear that he thought I was exaggerating everything sayings in his opinion its just bruising, maybe because of my age and also because I have admitted to having ME/CFS.

The NHS' attitude to our illness stinks.

Pam

 

[maryb]

@bertiedog
so sory to hear, that sounds very painful, my great dane knocked me down a long time ago in the same way, I was well then though and bounced back quickly (literally) hope you don't suffer longer term.

I could go on and on about the NHS and the attitude to ME patients, I have not met one consultant who has taken me seroulsy once they know I have ME. One orthopeidic man talked to my husband about my knee!!!! yes I can laugh now - even hubby was embarassed, that was FM - a severe flare.

Last one I saw this year about my back - his attitude changed immediately I opened my big mouth and said I also have ME............ he had a friend who was 'cured', he made him run and go training and got better.
He recommended I took up Tai Chi - swimming blah blah - spent an hour on tips.......god help me, I couldn't wait to get out.

Fort those of you who think they care,understand and believe its 'not all in our head' - nah - you're been hoodwinked.

 

[ukxmrv]

ME-CFS is not a psychological condition, but what we think and how we respond physically in this situation can influence the course of the illness in a helpful or an unhelpful way."

The physio was even aware of the studies that have shown that our muscles behave differently/wrongly during and after exercise.

I'd be asking them what they mean by the quote. My experience has been that there are both NHS and private clinics claiming to treat ME and CFS, that feel they need to dress up their true motive behind something that sounds palatable to patients. Could be wrong of course, but I would still press them and see how they react.

If the clinic believes that the immune system etc are involved in ME what testing and treatment do they offer that would make this claim plausible as an example? If they don't offer any of this and they are vague when you ask what is causing your ME then it may be a clue to what they really think.

I'm always reminded of something that I heard at the Gibson conference years ago. When Trudi Chalder was asked about Dr Kerr's work on abnormal gene expression in CFS she said to one panel member (and it was he that reported it at a public meeting) Chalder said "we would use CBT to fix the gene expression".

If the clinic does believe that certain factors are influencing ME then they can still believe that methods like CBT, graded exercise, pacing, relaxation are going to be cures or at least a large help justifying why they do nothing else.

 

[Snow Leopard]

I took this to mean 'acceptance' and to realise that the illness needs to be managed instead of trying to rush around like before. The realisation that pacing is necessary and to stop feeling guilty about not being able to do stuff.

If that is the case, why do they choose to use weasel-words?

One the things I value most is direct and clear language. Misleading language on the other hand worries me.

 

[tandrsc]

I think the choice of words is always going to be a tricky one. I think a person's state of mind is always going to affect their health whether sick or not, and what is helpful for one person may not be helpful for another. Unfortunately, anything mentioning a 'state of mind' is going to sound like they just think you're mad.

Personally - acceptance, a respect for my health, and a desire to take some control over the situation have all led me to make changes that have helped my health.

I only wanted to say that I'd had a positive experience in the NHS. We've been, bashed, belittled and ignored for so long (and still are being) so I can understand if no-one believes me. But in this particular case I was treated with respect, kindness and consideration.

 

[MeSci]

I think the choice of words is always going to be a tricky one. I think a person's state of mind is always going to affect their health whether sick or not, and what is helpful for one person may not be helpful for another. Unfortunately, anything mentioning a 'state of mind' is going to sound like they just think you're mad.

Personally - acceptance, a respect for my health, and a desire to take some control over the situation have all led me to make changes that have helped my health.

Me too. And I didn't need a clinic to do that! I have always tried to control my own life, and have for a long time been treating my own health conditions in preference to seeking advice from health professionals, enabling me to avoid them as much as possible, even before I started studying science.

Acceptance - that I have an illness, yes, but not acceptance of claims by health professionals, such as that the illness is incurable or that they have the answers.

 

[Xandoff]

Having a very real and terrible illness that is not acknowledged by the medical community puts all of us in a bind and places a big chip on our shoulders. After all these years maybe I could learn to remove that Chip on my shoulder before I see my regular GP. You would think after all these years I would learn not to talk about ME or CFS or new research that is coming out. Perhaps it's not all my fault though, I am just human, a human who is very ill. I cling to my beliefs just the same way the Broken Medical System clings to there's. Perhaps all our GP's have chips on their shoulders because they are so frustrated.

I don't think two people in the same room who have chips on there shoulders can really accomplish much. Especially when one of them has no perceived credibility and sounds crazier with every symptom they discuss.

Doctors don't like patients who don't get better. Usually a patient in this situation does the only respectable thing and dies. Sometimes I feel like the zombie patient that has refused to die and has the audacity to return to their nice clean waiting room just because all my joints hurt and I keep loosing weight.

Zombie Fatigue Syndrome......it has a nice ring to it.

 

[ukxmrv]

I think the choice of words is always going to be a tricky one. I think a person's state of mind is always going to affect their health whether sick or not, and what is helpful for one person may not be helpful for another. Unfortunately, anything mentioning a 'state of mind' is going to sound like they just think you're mad.

Personally - acceptance, a respect for my health, and a desire to take some control over the situation have all led me to make changes that have helped my health.

I only wanted to say that I'd had a positive experience in the NHS. We've been, bashed, belittled and ignored for so long (and still are being) so I can understand if no-one believes me. But in this particular case I was treated with respect, kindness and consideration.

That sounds as if you are saying that you have made some simple lifestyle changes and it is perfectly OK for the clinic to stop at that and not offer you any actual medical treatment.

I wonder how you would have been treated if you had no lifestyle changes to make or you wanted to be tested and treated as if you had a medical condition that could be helped with testing and treatment?

Would you then have been treated with "respect, kindness and consideration" then? I don't think so. hey would have shown you the door.

It's only that you are grateful for some crumbs and see these crumbs as having a higher value than those of us who want medical treatment.

The NHS should be treating all of it's ME and CFS patients equally and not "just" those who are happy to accept little.