Leeds ME/CFS clinic (UK)

[charles shepherd]

A personal account from Katie about of her experience at the NHS ME/CFS clinic in Leeds, Yorkshire:

http://katiecupcakelifewithme.com/2016/02/05/m-e-clinic-my-experiences-part-1-of-2-chronic-illness/

Would be interesting to hear from anyone else who has been treated/managed in Leeds

Leeds ME/CFS service:

http://www.leedspft.nhs.uk/our_services/CFS_ME

 

[Skippa]

The OTs in the clinic I went to (south of Leeds) were very much under the impression that effective pacing would lead to a magic recovery.

 

[Maria1]

I had a year at the NHS ME/CFS clinic in Leeds. Like Katie I was seen 4 to 6 weekly by an OT but never once by a doctor.

I found the support helpful and I'm not sure what I've done without it. I was very much on my own with this illness, and felt quite desperate. I was off work from a job I loved and needed, and a single mum to two school age kids who very much relied on me being well. My cognitive functioning was really badly affected, so I found taking in information incredibly difficult. I didn't want to believe I was ill, and I just wanted to get back to work as soon as I could.

The sessions I had helped me learn to pace, learn to accept I was ill (that was probably the biggest challenge), and try to stop beating myself up about being ill. When it became apparent I wasn't getting better, we turned to looking at retiring.

On the flip side, the service misses out on the medical side and my case was a good example of that. The service asks for blood tests from your GP on referral and mine showed up low ferritin. The OT told me I needed to get a prescription from my GP for this, as they don't prescribe. She said 'you only need a little bit'. I only took it for a short time, never realising what an impact low ferritin could have, and nobody followed it up with me.

I was also hypothyroid, with a TSH of 4.7. I didn't know it at the time. It was only a year later when a different GP tested me and looked back that it was picked up. I was then found to have autoimmune thyroiditis. A CFS service should exclude such things at the time of diagnosis. When I rang to discuss this with one of the doctors at the CFS clinic at the time, she told me it was a normal result, and that I should spend less time on the Internet and more time resting!

The negatives I got from the Leeds service do not outweigh the positive help. As I said I really don't know where I would be without it. It was supportive and non judgemental and a lifeline over an incredibly difficult year.

 

[Valentijn]

Sounds like the pacing aspect is good, but then they get a bit quacky with trying to introduce activity goals (even very modest and patient-directed ones). And helping identify precipitating factors, including "traumas and stress".

Then we get this ridiculous BS from the therapists:

One of the things they said lead me to a lightbulb moment of realisation… shortly before I got ill, I was in a very stressful job. As soon as I moved to my new job, which I loved and was much less frantic, my illnesses started. Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation. You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again. Nobody has ever explained it that way to me before, and it makes so much sense. It’s nothing to do with me consciously thinking that way, it’s the body’s own subconscious and chemical reaction.

Overall, it sounds like a lot of the useless and insidiously harmful crap I got from the "fatigue" clinic I went to. Though I'm impressed she's managed to stay so optimistic about it for 2 full years. And maybe her condition wouldn't keep declining if they focused more on pacing and less on "goals" which require more and more exertion (cooking, traveling to visit, X minutes of stretching, sitting upright to meditate). Frankly, the ignorance of those therapists is appalling.

 

[LC2015]

:thumbdown: I don't understand... How a clinic can take your medical history and identify a physical origin to your illness (infections etc, in this lady's case her botched appendectomy and subsequent issues)... But then AT THE SAME TIME deliver you some bizarre monologue about the brain needing to retrain itself ?!? Like, pick one!! You can't subscribe to both, surely? Genuinely amazed at this woman's patience and gratitude at their help. The OTs/nurses don't sound like bad people by any means but having that said to me would enrage me. It's irresponsible, isn't it? And she was in a job she loved by her own admission, so clearly her mindset wasn't in 'trauma mode' at all (whatever that means). Grrrr it's attitudes like these (yes you have a physical chronic illness...now here are some tips to think yourself out of it) which are obscuring any proper research!

 

[sarah darwins]

Then we get this ridiculous BS from the therapists:

lol. So being in a stressful job can cause ME. And no longer being in a stressful job can cause ME.

 

[TiredSam]

I'm pleasantly surprised about the good advice on pacing from these reports, better than I was expecting. It's a real shame about the harmful psychobabble. I wonder how much of that has to do with the individual OT? Lots of places I go these days, doctors, physiotherapists, whatever, I run in to people who have the basic training, then "get into" something and develop their "own method", last physiotherapist I went to for a bad back wanted to twiddle my toes, she had her "own version" of reflexology. Some health professionals abuse their position by trying to turn themselves into a guru with some whacky treatment, and then inflict it on a patients who went for standard care. Hard to know how much is a problem with the Leeds clinic and how much is a problem with the individual OT who's read a book on something. Not trying to defend anyone here, if it's the OT they should be supervised / fired / never allowed near an ME patient again.

 

[charles shepherd]

Leeds ME/CFS service also being discused here on the MEA Facebook page:

https://www.facebook.com/ME-Association-171411469583186/

where other people with personal experience of the Leeds ME/CFS service are providing (generally positive) useful feedback

 

[charles shepherd]

Leeds ME/CFS service also being discused here on the MEA Facebook page:

https://www.facebook.com/ME-Association-171411469583186/

where other people with personal experience of the Leeds ME/CFS service are providing (generally positive) useful feedback

Inclulding one very positive comment:

I've been at the Leeds cfs clinic for three years now and I ha en got nothing but praise for them. My ot has been fantastic and it's like visiting a friend now instead of the clinic

 

[charles shepherd]

Referral services for people with ME/CFS in Yorkshire

Worth noting that Sue Pemberton, who used to be the consultant occupational therapist with the Leeds ME/CFS NHS service, has now set up a private service with a consultant immunologist

I have worked with Sue on various ME/CFS issues over the years (she provided very useful input to the fluctuating conditions group when we were preparing our report on reform of the Work Capability Assessment) and have always found that she provides sensible pragmatic advice and information on management - activity/energy management in particular

This service also takes NHS referrals

More info here:

http://www.yorkshirefatigueclinic.co.uk/services

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[themjay]

Lets hope they have improved from when I was subjected to their methods - for an abridged account please see here

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

My experience was far from positive and their influence has continued to impact upon the level of care I receive
I realize since this time they have removed the immunology aspect from the service and several members of staff have left.

 

[katiecupcake]

Hey guys! I'm the blog writer - thank you all for reading! I just wanted to expand on a few bits after reading through your comments. My clinic is at the Newsam Centre, Seacroft Hospital. I totally agree with Maria1, the service does lack on the medical side (tests/meds) but that hasn't been an issue for me as I had extensive tests before ever being referred there. I hear from others in the UK that their clinic does deal with their meds but mine's always been with my GP (and hopefully the pain clinic when I finally get an appointment!!)

Just to expand a bit more Valentijn/LC2015, I totally believe ME is a real, physical illness. However, the reason the stress/trauma explanation made sense to me (not as a sole cause, but as a precipitating factor) is that I feel the link between body and mind is real and powerful. Not that it's 'in your mind', but that things like stress can cause very real, physical symptoms (eg heart attack etc). I have IBS and if I get nervous, I can get diarrhoea - that's an example of a purely mental feeling causing a physical reaction. I do think to an extent that emotions/trauma etc can stimulate chemical reactions (think adrenaline and cortisol). I just didn't want you to think I believe ME is all in the mind lol. Hope that makes sense!

Valentijn, I wasn't always so good at staying positive, I had some pretty miserable months last year but thankfully am feeling brighter and managing better now One of the reasons the clinic talk to me a lot about goals is that they know I'm a very goal motivated person and like to be trying to work towards something otherwise I feel a bit hopeless. They're very good at working from my cues, and often ask what I want, need and how I work best.

Themjay, I read your post. Sorry to hear about your terrible experiences, that's just not on we shouldn't have to keep fighting for help (when we don't have the energy lol!)

Hope this helped expand a bit for any vague areas! Xxx

 

[katiecupcake]

Oops sorry I forgot to say, part 2 is now available to read. I can't post links as I'm still too new but if you click back to the original link posted by Charles you'll be able to find it on my site

Reading everyone's views made me wonder, should I expand or add another post discussing and addressing some of the things above? Let me know if you think it would help both people with ME and public perception, as I want what I'm writing to help people understand the truth of our situations xx

 

[Aurator]

Thanks for your very interesting blog posts, Katie.

There are a few things in them I'm sure many PwME would question:

• That the OT and nurse "both have very specialised training in M.E."

I think many would have questions about the nature of that training and the accuracy of the knowledge it has equipped these people with.

• "Apparently the body ‘realises’ it can now stop and deal with the years of stress and trauma so it totally breaks down. It then becomes unwilling to get better, as it has a ‘memory’ of what came before – to put it simply, it thinks that if it gets better, it will be put back in the original, stressful situation. You almost need to re-train it to understand that the stressful situation/danger/threat is no longer there and it is safe to start functioning again."

I, and I'm sure many others, would like to know what evidence there is for this; it strikes me as mere speculation.

"You can tell the medical professionals have worked in the field a long time, as they have total understanding of the condition"

Again, they may give the impression that they have a total understanding of it, but I feel it would be very easy to probe this understanding and find the limits of it. It concerns me that they have obviously left you, and presumably other patients, with the impression that they have total understanding of ME/CFS; this is not something anyone with even a rudimentarily scientific mind would claim to have. It argues for faith in a certain belief system regarding the nature of ME/CFS rather than anything more solid.

 

[Valentijn]

Not that it's 'in your mind', but that things like stress can cause very real, physical symptoms (eg heart attack etc).

Except that it almost certainly does not trigger ME. Numerous prospective studies (versus retrospective) have only indicated infectious triggers, and other prospective studies have pretty well ruled out the emotional stress/abuse/etc theories.

It's also not very plausible to suggest that because there can be short term physical effects from stimuli (such as adrenaline rush), that such stimuli can somehow cause long term symptoms. Basically it's a pretty vague and fantastical hypothesis, which has no evidence supporting it.

I'd be curious to know their rationale (and yours) for the continuation and worsening of your condition.

One of the reasons the clinic talk to me a lot about goals is that they know I'm a very goal motivated person and like to be trying to work towards something otherwise I feel a bit hopeless.

Yes, my clinic did the same. They asked me what I wanted to be able to do, and I happily and optimistically told them. It's their way of manipulating patients into increasing activity levels. It doesn't work, but at least they can blame the patient for either setting the wrong goals or somehow failing to pursue them appropriately.

Do you expect that their treatments will make you healthier and/or allow you to recover? How do you intend to increase your activity level - or do you plan to cut out some activities so you can cook and socialize?

Why don't they help you optimize your living space to do activities more efficiently, since that is the sort of thing occupational therapists usually do? It seems like they are focused completely on behavioral changes, with no practical physical support. Would they support you in getting disability aids, such as a shower chair or a wheelchair or similar?

I understand the need to keep up hope, but people often end up devastated when they realize they were being misled. And frankly, there's plenty of hope in biomedical ME/CFS research, such as the results of the Rituximab trials, Lipkin & Hornig's immune research, etc.

 

[ukxmrv]

Hey guys! I'm the blog writer - thank you all for reading! I just wanted to expand on a few bits after reading through your comments. My clinic is at the Newsam Centre, Seacroft Hospital. I totally agree with Maria1, the service does lack on the medical side (tests/meds) but that hasn't been an issue for me as I had extensive tests before ever being referred there. I hear from others in the UK that their clinic does deal with their meds but mine's always been with my GP (and hopefully the pain clinic when I finally get an appointment!!)

Hi Katie,

Can you let me know what is the "extensive testing" that you had before attending the clinic? The reason i am asking is that I am in London but although I have access to several major hospitals we don't get adequate testing here.

I'm wondering where you were lucky enough to get this?

 

[themjay]

The problem seem to be the disconnect between what health "professionals" are meant to be seen to pay lip service to i.e M.E is a physical illness and the reality of what the majority actually believe.

My last GP attempted to raise my case at the monthly multi-disciplinary meeting they have - she was enquiring as to whether the occupational therapist could provide aids to help every day life etc. The meeting was attended my GPs, Nurses, Occupational therapist and a physiotherapist.

She told me she had faced universal resistance from all members of the group that M.E should be treated as a physical illness - ALL believed it was a psychiatric issue.

The occupational therapist telephoned my partner and carer two weeks later. My partner asked about devices to help around the house - she told her in no uncertain terms that what should be offered is CBT and GET and that they could visit to discuss! Needless to say we now avoid the surgery at all costs and I suspect many others in the UK to the same.

I am not an isolated case, another forum member Woolypigs is a patient at the same surgery and has experienced the local fatigue service mafia - and yet this is the best in the area - the others are worse...

How many severely ill people are in the position to challenge the levels of "care" they are meant to receive - not many I warrant.

 

[Quilp]

Hi Katie

I don't quite understand. You say that you were working full time at the moment of your first appointment, and yet during treatment over the next twenty four months you became worse ? That might not have been related to the treatment, but then again I am not sure I would have continued with the treatment, were my health to decline. Perhaps I have got the wrong end of the stick ? Apologies if this is so.

I have been to the clinic in Leeds, but let me qualify my remarks by saying that this was in 2006/7. Not exactly sure, perhaps because I am trying to forget.

You could find the ''CFS clinic'' under the Mental Health unit board that sits in the grounds. I don't believe that cancer or MS sits under such a board. Why not ? It is a reasonable question surely ? I want to get better, and I don't care how I get there; let me make that abundantly clear, but am I being vexatious in asking such a question ?

We have over fifteen thousand members on this board, and I've yet to see a thread saying, ''If it's a psychiatric illness I don't want to get better because I don't want anything to do with psychiatry''.

The fairy tale goes like this :

Let us go along with the patients narrative, we will keep quiet, we will not challenge them, we will not dismiss their concerns, but we will follow our modus operandi, because we know. We know best because this illness is an illness that can be treated effectively by breaking the cycle. And that cycle is one whereby they are trapped into inactivity by an irrational fear. That feeds into a physical breakdown of the body ( all the symptoms that are commonly referred to )

I am not saying that CBT might not help some. Indeed anything that helps has to be welcomed, but please let it be said that CBT will never be a front line treatment for this illness. And GET should come with a warning just like a prescriptive drug. In fact I would go further and take away GET as a treatment for this dreadful disease because it goes against everything I believe about this illness. I have never known a doctor to prescribe GET for flu.

Oddly enough I do remember talking to Sue Pemberton, and I vaguely remember anti-virals being mentioned, though I have no idea why, because it wasn't brought up by me. I could be wrong but did she think about Wessely's ''somatisation par excellence'' when she said that. Truly I don't know, because there were no blood draws for anything whilst I was there.

I don't believe in fairy tales, but perhaps dreams do come true. And if they do we will have scientists like Lipkin to thank, not an OT in a CFS clinic in the Mental Health Unit at Leeds.

 

[Snowdrop]

Inclulding one very positive comment:

I've been at the Leeds cfs clinic for three years now and I ha en got nothing but praise for them. My ot has been fantastic and it's like visiting a friend now instead of the clinic

What would really help here is if the person making the comment would say something about how ill they were and what treatment and how it helped.

The comment is otherwise pretty vague and therefore not particularly helpful.

 

[katiecupcake]

Wow, a lot of responses and information to process here! I'll try my best to reply to each of you.

I get the feeling people think I'm buying in to the idea that ME is psychological. I have both ME and fibromyalgia and believe in no uncertain terms that they are real, physical illnesses. I am just trying to take full advantage of whatever help *is* currently available as my only other option is to refuse help and get accused of not wanting to get better. Yes, to put it basically this position sucks and we keep having to 'prove' we're ill, which is wrong! But whilst we fight for better scientific testing and advances, I can only use what resources are currently offered my way.