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Leeds and West Yorkshire CFS/ME clinic
- Thread starter woollypigs
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CantThink
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Have you looked at Blue Horizons Infectolab tests?
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- UK
@CantThink yes but somewhat confused to which one gets the best results. Should I also look into my B12 etc while we at it.
EDIT to add: not put my full attention to it as my partner is down with a nasty flu, so on full tea and tissues support duty.
EDIT to add: not put my full attention to it as my partner is down with a nasty flu, so on full tea and tissues support duty.
Just to add what i know about this clinic as a former patient and from my involvement with Leeds ME Network support group: As people have mentioned, this clinic operates within the NICE guidelines, so they concentrate on illness management rather than medical treatments. So that's enough to rule them out for a lot of people and I can understand that point of view. Nevertheless they used to be one of the best NHS clinics in the country, using graded activity rather than exercise, in recognition of the fact that people with ME have enough trouble trying to carry out everyday tasks without trying to exercise on top of that. They provided guidance on how to establish baseline activity and then increase activity very gradually. In most cases the focus was on encouraging their patients to do less rather than to do more. They found that most of their patients had a problem with 'boom and slump' rather than 'fear avoidance'. In other words, they recognised that patients had a tendency to use their better days to catch up on everything they'd got behind with and so ended up making themselves worse again, something I'm sure a lot of us can recognise. It seemed to me that what they were doing was assisting people to pace.
Most of this 'therapy' was carried out by an OT, though I also had CBT and sessions with Dr Akagi the psychiatrist. I found all of it helpful. The CBT was *not* about encouraging me to ignore my illness and do more but to address issues such as guilt and 'people pleasing' which were getting in the way of me pacing. The sessions with Dr Akagi addressed my anxiety, mainly through the use of medication. It seemed to be acknowledged that the anxiety was an understandable result of my illness, not the other way round. So, my experience was good, and most of the feedback we got in the local support group was positive, though by no means entirely so.
Unfortunately things took a turn for the worse in 2012 when some of the most experienced staff, including Lead OT Sue Pemberton and Consultant Immunologist Dr Wood, left as part of a cost-cutting exercise and others with no previous experience of ME were brought in. As the clinic is run by a mental health trust (basically because no one else wanted it), many of these newcomers have come from a mental health background which is far from ideal. The clinic say they are still using the same basic approach but the limited amount of feedback we get in the local group is less positive than it was and many people in Leeds have asked for out of area referrals to the Yorkshire Fatigue Clinic (YFC) instead. YFC is an independant provider which was set up by Sue Pemberton, the Lead OT who was sacked from Leeds in 2012. YFC has a better reputation among patients, though once again treatment is limited to illness management.
Leeds ME Network has information on the clinics: http://leedsmenetwork.yolasite.com/local-links.php
and also information on how to apply for NHS referral to YFC: http://leedsmenetwork.yolasite.com/nhs-referral-to-yorkshire-fatigue-clinic.php
Such referrals from Leeds seem to be blocked at present, however, something which is under investigation.
Just to clarify: the Leeds and West Yorkshire CFS/ME Service is an outpatient clinic. There is an associated inpatient ward, whose title The Yorkshire Centre for Psychological Medicine should tell you everything you need to know about it. Almost all the feedback we've heard from it is bad. Their strategy seems to be to drug people up so they rest for a few weeks then gradually exercise them till they get better. This may work fine for people with depression or burnout but not for ME of course. So when the treatment doesn't work, they seem to take away the ME diagnosis and replace it with 'medically unexplained symptoms' (as has been mentioned) or 'illness anxiety' (which used to be known as hypochondria!)
So that's what I know. I see that you are only mildly affected? So it seems to me that pacing properly may be your best approach for the time being. Why try more expensive and potentially higher risk strategies until you've given pacing a good try? And the clinic, in spite of its limitations, may be able to help you with that. All I would say is: be very cautious. If they start trying to push you to do more than you are comfortable with, say no! And make sure you ask for a copy of anything they send to your doctor and complain if you're not happy with what they've written. There's been some negative feedback about their letters.
Leeds ME Network are always very happy to hear feedback about the local clinics. You can contact us via our website: http://leedsmenetwork.yolasite.com/contact-us.php
Most of this 'therapy' was carried out by an OT, though I also had CBT and sessions with Dr Akagi the psychiatrist. I found all of it helpful. The CBT was *not* about encouraging me to ignore my illness and do more but to address issues such as guilt and 'people pleasing' which were getting in the way of me pacing. The sessions with Dr Akagi addressed my anxiety, mainly through the use of medication. It seemed to be acknowledged that the anxiety was an understandable result of my illness, not the other way round. So, my experience was good, and most of the feedback we got in the local support group was positive, though by no means entirely so.
Unfortunately things took a turn for the worse in 2012 when some of the most experienced staff, including Lead OT Sue Pemberton and Consultant Immunologist Dr Wood, left as part of a cost-cutting exercise and others with no previous experience of ME were brought in. As the clinic is run by a mental health trust (basically because no one else wanted it), many of these newcomers have come from a mental health background which is far from ideal. The clinic say they are still using the same basic approach but the limited amount of feedback we get in the local group is less positive than it was and many people in Leeds have asked for out of area referrals to the Yorkshire Fatigue Clinic (YFC) instead. YFC is an independant provider which was set up by Sue Pemberton, the Lead OT who was sacked from Leeds in 2012. YFC has a better reputation among patients, though once again treatment is limited to illness management.
Leeds ME Network has information on the clinics: http://leedsmenetwork.yolasite.com/local-links.php
and also information on how to apply for NHS referral to YFC: http://leedsmenetwork.yolasite.com/nhs-referral-to-yorkshire-fatigue-clinic.php
Such referrals from Leeds seem to be blocked at present, however, something which is under investigation.
Just to clarify: the Leeds and West Yorkshire CFS/ME Service is an outpatient clinic. There is an associated inpatient ward, whose title The Yorkshire Centre for Psychological Medicine should tell you everything you need to know about it. Almost all the feedback we've heard from it is bad. Their strategy seems to be to drug people up so they rest for a few weeks then gradually exercise them till they get better. This may work fine for people with depression or burnout but not for ME of course. So when the treatment doesn't work, they seem to take away the ME diagnosis and replace it with 'medically unexplained symptoms' (as has been mentioned) or 'illness anxiety' (which used to be known as hypochondria!)
So that's what I know. I see that you are only mildly affected? So it seems to me that pacing properly may be your best approach for the time being. Why try more expensive and potentially higher risk strategies until you've given pacing a good try? And the clinic, in spite of its limitations, may be able to help you with that. All I would say is: be very cautious. If they start trying to push you to do more than you are comfortable with, say no! And make sure you ask for a copy of anything they send to your doctor and complain if you're not happy with what they've written. There's been some negative feedback about their letters.
Leeds ME Network are always very happy to hear feedback about the local clinics. You can contact us via our website: http://leedsmenetwork.yolasite.com/contact-us.php
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- UK
@potbatch Thanks for that, will keep that in mind when I get my first appointment. The two times I have been there, they have sent very well written (compared to the other NHS people I have seen) to me and my GP.
I have read about YFS and wonder if I can talk my GP into referring me there, I'm in Skipton.
I have read about YFS and wonder if I can talk my GP into referring me there, I'm in Skipton.
SOC
Senior Member
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Have you seen the CFS Roadmap? It can give you some direction.
For some reason I cannot remember the Roadmap exists.
Every now and then someone reminds me and I try to pass it on until my brain loses it again.... sigh. Maybe we need to give it a little more airtime here at PR so people who need it know it's there.
CantThink
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I hope your partner recovers quickly. Flu is horrible - when it's really bad it's so miserable.
Re: tests - do you have the ability (and desire) to see Prof Kenny De Meirleir in Brussels? If so, I'd pick that route over running your own tests. Reason being - he'll order the tests and guide you through diagnosis/treatment. The only issue with that (aside from obvious ones) is that sometimes the treatment is hard to coordinate in the UK (it can be done in Brussels but requires staying there for a while).... So it is worth looking into that aspect if you are considering consulting with him.
If not, as you suspect Lyme (or I can't remember if you got a diagnosis of Lyme), I'd order their Lyme test... You can order their comprehensive set of tests or just one type for Lyme. You could (when you have time) do a separate thread on Lyme in the section on the forum (I think it's called co-infections or co-morbid conditions or something) to ask which is the best test or whether you need all of them.
You might find it useful to test for some of the other co-infections, but you could wait until after you've done your Lyme one. There's viral infections some people have chronically and also infections like Bartonella... If you have a look in the correct section on here you'll see what other people tend to test positive for. Sometimes people have more than one infection going on.
I know based on symptoms if I tested for Lyme, I'd probably test for Bartonella also. In addition because of my illness history I'd do their comprehensive virus panel which includes Epstein Barr and herpes viruses.
Their active B12 test is supposed to be good. I personally would try to identify possible issues via researching symptoms and then test for those. It depends what you've already had tested - get all your results and comb through them.
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@CantThink Thanks! Yeah it is not fun for her - lung infection, coughing and asthma not the best combo.
I have been tested for Lyme and it came back negative, as in there is no Lyme.
Might be time to visit our friends in Brussels. Ohh I see KDM is located not far from Grimbergen, which is one of my favourite beers. So something good will come out of a visit to Brussels. Oh yes it would be good to see our friends too
I have been tested for Lyme and it came back negative, as in there is no Lyme.
Might be time to visit our friends in Brussels. Ohh I see KDM is located not far from Grimbergen, which is one of my favourite beers. So something good will come out of a visit to Brussels. Oh yes it would be good to see our friends too
CantThink
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Yes, you should be able to get a referral to YFC if you live in Skipton. Someone else who attends our group and lives in Skipton was recently referred there.
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@CantThink Yes the NHS test.
@potbatch Let's see how Leeds goes and if I don't like it I'll move to YFC.
@potbatch Let's see how Leeds goes and if I don't like it I'll move to YFC.
CantThink
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@woollypigs
I don't know the ins and outs of it, but Lyme testing is renowned for being notoriously difficult. I believe the NHS test is somewhat unreliable.
This page (which I've earmarked to read later) seems helpful in explaining some of this stuff: http://www.mesupport.co.uk/index.php?page=lyme-disease-borreliosis-m-e-in-the-uk (though am not sure if the effective testing part is up to date or not).
I don't know the ins and outs of it, but Lyme testing is renowned for being notoriously difficult. I believe the NHS test is somewhat unreliable.
This page (which I've earmarked to read later) seems helpful in explaining some of this stuff: http://www.mesupport.co.uk/index.php?page=lyme-disease-borreliosis-m-e-in-the-uk (though am not sure if the effective testing part is up to date or not).
Esther12
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From what I've read it seems that the NHS testing is as reliable as any other and there are no benefits to the alternative testing available, which can have it's own problems.
CantThink
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I don't want to get into a debate about Lyme on here as it is not something to do with me personally, and this thread is about something else anyway.
However, I do think if I was in a position where Lyme seemed possible (tick bite & rash), and I had just recently become unwell, and then the NHS test said negative, I'd not just accept that one test.
You might find this helpful Woollypigs: http://www.lymediseaseaction.org.uk/about-lyme/tests/
However, I do think if I was in a position where Lyme seemed possible (tick bite & rash), and I had just recently become unwell, and then the NHS test said negative, I'd not just accept that one test.
You might find this helpful Woollypigs: http://www.lymediseaseaction.org.uk/about-lyme/tests/
CantThink
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P.S. good luck with whatever you choose to do Woollypigs. I hope if you do see the CFS service that they are able to help you. Take care.
The older, more standard tests have a very high rate of false negatives - in the neighborhood of 50% when used alone, and they only say to go for the 2nd test if the first one is positive
Whereas at least one published paper indicates that the Elispot-LTT has resolved that problem, and without increasing the rate of false positives in the process.Grimbergen is great ... and there's a couple decent hotels. Hotel Abbey was the better one, though I think it's usually closed on weekends as they primarily deal with group events. And Het Fenixshof (The Phoenix Courtyard) restaurant is sublime, with a view to die for especially if it's the right season to sit outside.Might be time to visit our friends in Brussels. Ohh I see KDM is located not far from Grimbergen, which is one of my favourite beers. So something good will come out of a visit to Brussels. Oh yes it would be good to see our friends too
Regarding Dr. Hiroko Akagi, the full text of "Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital—feasible and effective" does seem to affirm that she's 100% in the psychological camp. She was the first listed author. The study mentions Fukuda, but selects patients based only upon Oxford CFS. Out of 22 sources, they reference 8 papers by Wessely, 7 by Chalder, and 6 by Sharpe, as well as quite a few other psychosomatic BPS authors. They specifically thank Michael Sharpe at the end.
Some excerpts (bolding and underlining :
There's a lot of the usual problems here which are seen in BPS research: blind belief that CFS is psychological/psychosomatic, reliance on entirely subjective measurements, and excessive enthusiasm about statistically insignificant or marginal results. But it does lack the deliberate spin and little nasty bits which the worse psychosomatic researchers frequently exhibit. They also don't try to hide information (such as patients frequently disagreeing with therapists regarding their improvement), though they also don't have any curiosity regarding such discrepancies.
So my overall impression is that the authors believe that CFS is 100% psychosomatic, equivalent with "neurasthenia" as quoted above. They 100% believe that CBT is helpful in improving the disease itself, and not merely as a supportive coping mechanism. There are very strong indications that they believe that beliefs and behaviors are a driving force in continued CFS symptoms.
Some excerpts (bolding and underlining :
Dr. Akagi et al said:
There's a lot of the usual problems here which are seen in BPS research: blind belief that CFS is psychological/psychosomatic, reliance on entirely subjective measurements, and excessive enthusiasm about statistically insignificant or marginal results. But it does lack the deliberate spin and little nasty bits which the worse psychosomatic researchers frequently exhibit. They also don't try to hide information (such as patients frequently disagreeing with therapists regarding their improvement), though they also don't have any curiosity regarding such discrepancies.
So my overall impression is that the authors believe that CFS is 100% psychosomatic, equivalent with "neurasthenia" as quoted above. They 100% believe that CBT is helpful in improving the disease itself, and not merely as a supportive coping mechanism. There are very strong indications that they believe that beliefs and behaviors are a driving force in continued CFS symptoms.
That is my surgery as well. I have severe ME and have been housebound for ten years and need a carer, so I am at the opposite of the spectrum to you. I have however spent thousands on tests and treatments as well as jumping through all the NHS hoops. My Dr is retiring so I have been seeing a temporary doctor - Dr Yasin who is there until August. She will be briefing the new partner, who is a young doctor she trained with before she leaves. She is very sympathetic and spends ALOT of time with you. She has also been reading all the latest research material I have been giving her as well. She has spoken to the Dr you mentioned at Leeds as an extra benefit. I would recommend her. Hope that helps