Leeds ME/CFS clinic (UK)

[Cap413]

I spoke to Sue Pemberton last week as I am trying to get my treatment transferred to the Yorkshire Fatigue Clinic from the Newsam Centre. I spoke to her at length and found her to be understanding, supportive and caring. I explained to her the focus of treatment I have been receiving at the Newsam Centre and how I have been told to start grading back up when I clearly am unable to. She sounded shocked, explained that their approach at the YFC is to never pressure you to do more than you are able to, and that the treatment is patient led. Regardless of what the website says, which does sound like a load of jargon, this approach sounds right to me.

We may be able to receive a diagnosis in the UK, but treatment on the NHS is usually some form of GET/CBT carried out by mental health professionals who have no clue of how to treat CFS/ME. If you don't see someone who understands the condition and knows how to treat it, and as a patient you put your faith in that person and trust them, you can end up a whole lot worse than you did when you went in. I speak from experience.

Just to clarify, for referral into YFC symptoms should be present for more than 6 months and other conditions investigated and excluded. Full blood tests also need to be carried out. See here for referral guidelines. When I was diagnosed I was interviewed for an hour and a half about my health and how it affected me. This was after 10 years of reporting the same symptoms to my GP. Even after that, my case had to be reviewed by a panel of staff because they couldn't be sure that I didn't just have 'anxiety' so I'm sure they don't just hand out a diagnosis after 3 months.

 

[JohnM]

I spoke to Sue Pemberton last week as I am trying to get my treatment transferred to the Yorkshire Fatigue Clinic from the Newsam Centre. I spoke to her at length and found her to be understanding, supportive and caring ..

I also found Sue to be understanding, supportive and caring when she was at the Leeds ME/CFS clinic. That said, I found her explanations for this awful disease very unsatisfactory .. lots of talk about being a 'type a' personality, potential links with the HPA axis, and 'fight and flight' theories.

.. their approach at the YFC is to never pressure you to do more than you are able to, and that the treatment is patient led. Regardless of what the website says, which does sound like a load of jargon, this approach sounds right to me.

We may be able to receive a diagnosis in the UK, but treatment on the NHS is usually some form of GET/CBT carried out by mental health professionals who have no clue of how to treat CFS/ME.

The STEP programme does appear to me to a more pragmatic version of GET/CBT. On further reading, and in their 'Information for commissioners' leaflet (p2), they state the following (my bolding):

"There are currently no pharmacological interventions available that eradicate fatigue. However, many factors can increase fatigue; therefore there are factors that can help to improve fatigue. The Yorkshire Fatigue Clinic uses treatment approaches recommended by the NICE Guidelines, including a collaborative approach to care, grading activity and cognitive behavioural interventions. The therapy sessions also explore factors that can impair physiological processes that support energy, such as sleep patterns, diet and poor quality rest.

..

Patients and their carers are initially invited to attend an Introductory Workshop to explain the clinical model used and ensure they are committed to undertaking a rehabilitation programme."

Just to clarify, for referral into YFC symptoms should be present for more than 6 months and other conditions investigated and excluded. .. Even after that, my case had to be reviewed by a panel of staff because they couldn't be sure that I didn't just have 'anxiety' so I'm sure they don't just hand out a diagnosis after 3 months.

@Cap413
Could I ask you if the Leeds CFS/ME clinic gave you a confirmed diagnosis of CFS/ME?

It would also appear that their 'Referral Guidelines for GP's' is out of date? As you note, symptoms should persist for more than 6 months for referral. However, in their 'Information for patients' leaflet (p1), they state the following:

"If you have had symptoms for over three months then specialist assessment and treatment needs to then be considered (as specified in the NICE Guidelines for CFS/ME)."

As an aside the CG53 Nice Guidance (1.3.1.1) states that diagnosis can be made after 4 months for an adult, and 3 months for a child or young person (if made or confirmed by a paediatrician.) I was also under the impression that 6 months was still required prior to CFS/ME being considered as a diagnosis .. does anyone know when did this change to 4 months?

I also noted that all clinicians are members of BACME, and would appear to have some links with AfME and AYME. I did not know until I visited their web site, that Dr Wood was "a member of the group commissioned by the National Institute for Health and Clinical Excellence (NICE) to develop clinical guidelines for the diagnosis and management of CFS/ME."

All red flags for myself.

I do hope some of the above additional information is of help, and not seen as a criticism of your wish to go the Fatigue Clinic; as you rightly note, your 'treatment' with the current Leeds CFS/ME clinic has been appalling. I do wish you well for the future, and also hope that the Yorkshire Fatigue Clinic can be of some benefit to you.

 

[Snowdrop]

That said, I found her explanations for this awful disease very unsatisfactory .. lots of talk about being a 'type a' personality, potential links with the HPA axis, and 'fight and flight' theories.

This explanation for neurological/hormonal/autoimmune diseases is very prevalent in the media. Some suggestive studies where the media handout simplifies and exaggerates by inferring what might be happening. It's the compelling narrative. It brings in a psychological component where none need exist.

Many, particularly non science people, want to believe. It means they can do something to change what's happening and it offers control. And we all want to understand ourselves and why we do what we do in a way that suggests our active participation. Rather than, sometimes shit just happens. Even with cancer there are narratives about personality's effect on causing illness.

The health media are very much oriented toward bullying your illness into submission.

 

[Cap413]

@JohnM Thanks for the information, and I don't see it as a criticism at all, any information I can gather about Sue Pemberton and her approach to treatment from past patients is a help, to know what to expect. I think by now I have enough experience of the NHS to know that they won't give me answers but more symptom management. But as I am so severely impacted at the moment, what would be good to know is how impacted you were when you saw her and if she helped you at all to improve? (Apart from the poor explanations)

The point about different pathways to CFS/ME has been discussed on different threads and I think the pragmatic approach to treating the illness maybe helps in a small percentage of cases related to the cause. For example I've seen 'burnout' classed as CFS/ME (or the cause of) in a number of places which is probably where the explanation of low cortisol, suppressed HPA axis and Type A Personality etc come from. But I agree in most cases this is not the cause (not for me either) and having this shoved down your throat as an explanation and be made to feel that I am responsible for my illness and for not improving is mentally damaging.

Yes the Leeds CFS/ME centre diagnosed me. Were you diagnosed there as well?

And you're right the document detailing 6 months prior to referral seems to be out of date. I always thought it was 6 months to ensure things like burnout weren't misdiagnosed. Interesting.

 

[dangermouse]

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

@charles shepherd
Excuse my foggy mind, it's not a great time for me currently. I am confused. Are you in favour of the Leeds Clinic? (I ask as the MEAssocition website recently announced the return of a Dr Chauduri who works with CFS/ME patients at (I think) the Queen's Hospital, Romford, saying that he's currently seeing new patients, but that particular clinic/department states that it follows the current NICE guidelines for CFS).

I thought that the MEAssociation was against the GET and CBT that the NICE guidelines promote?

Apologies if I've misunderstood. Could you clarify?

 

[JohnM]

@Cap413
Apologies on delay in reply .. been in recovery mode since a visit to a local Falls Clinic last week, and also away from my macbook over the weekend.

I will try to be concise in my response to your questions ..

Yes, I was diagnosed at the Leeds CFS/ME clinic in January 2012. Her diagnosis was based primarily on a 40 min+ conversation, including a brief discussion of symptoms, and subjective observations.

I first presented to my GP in January 2009, following a brief illness in Aug 2008, and rapid weight loss between Christmas and the New Year the same year. I was unable to continue working as of May 2009, and how I managed to get to the end of the academic year (I was a lecturer), I have no idea.

My observation on meeting Sue for the first time requires some clarification I think. On meeting Sue for the first time, she was able to acknowledge the severe impact this disease has on your life; in was in this context, I found her to be understanding, supportive and caring, and sadly lacking in other medical professionals I'd met to that point.

As said above, her discussion of HPA axis and the like, together with handouts on GET and PACING I found less than satisfactory; so poorly written, I had the impression that they were unable to differentiate sufficiently between the two approaches. The idea that undertaking an activity for few minutes every hour then resting for remainder, then trying to build up a few minutes at a time as you stabliise your activity levels, I found to be unrealistic.

On meeting for the second time - a few months later - my condition had deteriorated markedly; I presented with serious mobility, other neurological issues, and the like. I discussed how despite my best efforts, this approach was unrealistic for myself, given all the other stuff I had going on at that time - I was going through a separation/divorce at the time, and our son had recently been diagnosed with Crohn's Disease, so I was spending a lot of time in and out of hospital helping to care for him.

I think it was too easy for Sue to dismiss my deterioration to everything going on in my life at that time. Though my deterioration was acknowledged, it was suggested, as an example, to try to continue limiting activity levels for 20 minutes at a time, and then rest up for 4 hours as a compromise, as I recall? I think it was agreed to meet up again when my personal situation had resolved some, but never happened .. was around the time Sue moved on from the Leeds CFS/ME clinic.

I guess it was left to my GP to decide how best to investigate my mobility and other neurological issues further. It was news to me at the time, but my GP had referred me on to the local community rehabilitation team, and I'm both happy and fortunate that he did do so. I was seen by a couple of physiotherapists who specialised in neurological conditions, was given some very light stretching and strengthening exercises, which continue to be helpful to this day. I was also provided with walking sticks (which I was repeatedly refused by a locum GP - despite my ataxia, numerous falls, losses of power and/or balance) a bed cradle, and other disability aids for use in and around the house. I think I would be right in stating that the physios were horrified that I'd been left to deteriorate so markedly, and had been refused requests for mobility aids.

In summary, I think Sue, and her colleagues at the Yorkshire Fatigue Clinic, are fully signed up advocates
in the belief system that is the CBT/GET 'treatment' route to supposed recovery. They just happen to be a little more pragmatic in that their approach, in so much as they do not push patients to meet any pre-agreed timetable for supposed improvements and/or recovery.

Best wishes

 

[JohnM]

=begin rant
I guess one of the most galling things for myself regards the CFS/ME clinics, is that more 'objective' tests that could be asked of the referring GP, or undertaken in the clinics themselves, are not undertaken as a matter of routine, nor are they encouraged.

Examples off the top of my head, would include, the use of 24 hr BP and HR monitors, poor mans table tilt test, rhomberg/fukuda stepping and other neurological tests, full thyroid panel, active B12 test, to name but a few ... such results could add to so much to the literature, and our understanding of the biological processes underpinning this awful disease.

I will leave folks to draw their own conclusions as to why such tests are not undertaken by GP's and/or CFS/ME clinics as a matter of routine ..
=end rant