United Kingdom: Epsom & St Helier University Hospitals - South West London & Surrey ME/CFS Specialist Service (Bansal, Lazarova)

Cinders66 said:
There’s a download on the page above called understanding CFS/ME. I think that this section is worryingly like that from the rcgp module. My illness started at a level where I wasn’t taking prolonged rest. I had an initial sickness but then I went back to a “reduced”level of function activity where many of the symptoms below were present as I felt ill and had sickness symptoms but cannot be explained away by excessive rest of the type needed to qualify as deconditioning. I feel sometimes the absurdity of our situation is beyond the pale.

“What are the physical effects of Chronic Fatigue Syndrome?
The increased fatigue that people with CFS experience usually leads them to take prolonged rest. This prolonged rest has physical consequences. Medical investigations show that there is no disease cause for these physical symptoms, they occur as a direct result of inactivity and prolonged rest.
The physical effects include:
 Changes in muscle functioning resulting in pain and discomfort
 Changes in body temperature, for example hot flushes and night sweats
 Reduced calcium levels
 Reduced ability to exercise
 Deconditioning of heart and blood vessels
 Impairment of immune system leading to reduced ability to fight off viral infections
 Changes in body rhythms effecting secretion of hormones leading to problems with sleep, appetite and alertness
 Changes in the nervous system causing neural hypersensitivity leading to problems such as intolerance to sound and light
 Changes in mental function such as reduced concentration or impaired short term memory”

How do you explain ME symptoms via the above to people who begin mild-moderate , rather than severe ... If there’s “no disease” why does the person suddenly get fatigue and why is it assumed fatigue happens in isolation rather than as a constellation of fatigue, pain, autonomic and immune issues
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Yes, @Cinders66 - absurd and concerning list. Looks like they are trying to explain all the symptoms of ME - but they missed OI - unless they rationalize it's under another of these subheadings.

Whenever we say deconditioning did not cause our ME, they put their hands over their ears, and say "la, la, la". Gradual onset ME for active people, should help convince rational people that ME is not caused by deconditioning - but at this point it seems not to get any traction.

For those of us who can walk a bit - if your BP is OK to good, this may show some in the health profession you're not deconditioned. I had this experience. Initially the health pro thought I was another lazy "cfs" person, but was surprised to see my BP numbers, and became more positive toward me. So sad, that tests and numbers are required in order that some patients aren't treated poorly.
 
"Medical investigations show that there is no disease cause for these physical symptoms, they occur as a direct result of inactivity and prolonged rest."

Wow...! That's a bit much isn't it?! Where is the evidence for that statement? Or, are they allowed to say whatever they want... is there no regulatory oversight? If this was a commercial product, the Advertising Standards Authority wouldn't allow it.

I'll rewrite it for them:
"If we are unable to diagnose a disease cause for your symptoms, that means they are your fault."

Cinders66 said:
There’s a download on the page above called understanding CFS/ME. I think that this section is worryingly like that from the rcgp module. My illness started at a level where I wasn’t taking prolonged rest. I had an initial sickness but then I went back to a “reduced”level of function activity where many of the symptoms below were present as I felt ill and had sickness symptoms but cannot be explained away by excessive rest of the type needed to qualify as deconditioning. I feel sometimes the absurdity of our situation is beyond the pale.

“What are the physical effects of Chronic Fatigue Syndrome?
The increased fatigue that people with CFS experience usually leads them to take prolonged rest. This prolonged rest has physical consequences. Medical investigations show that there is no disease cause for these physical symptoms, they occur as a direct result of inactivity and prolonged rest.
The physical effects include:
 Changes in muscle functioning resulting in pain and discomfort
 Changes in body temperature, for example hot flushes and night sweats
 Reduced calcium levels
 Reduced ability to exercise
 Deconditioning of heart and blood vessels
 Impairment of immune system leading to reduced ability to fight off viral infections
 Changes in body rhythms effecting secretion of hormones leading to problems with sleep, appetite and alertness
 Changes in the nervous system causing neural hypersensitivity leading to problems such as intolerance to sound and light
 Changes in mental function such as reduced concentration or impaired short term memory”

How do you explain ME symptoms via the above to people who begin mild-moderate , rather than severe ... If there’s “no disease” why does the person suddenly get fatigue and why is it assumed fatigue happens in isolation rather than as a constellation of fatigue, pain, autonomic and immune issues
Click to expand...
 
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Right at the start people questioned the idea of deconditioning being the cause of ME in it's new guise of CFS. They simply refused to test if patients were actually deconditioned. Ramsay's description of ME included patients who were fine for months at a time then collapsed so being fit and not resting all the time was part of the concept of the disease.

Any disease where many of the patients were living a normal life until they became ill on a particular date cannot be because of deconditioning. The sly way they introduced having 6 months wait before diagnosis meant they could get away with it. If you wait for 6 months to treat a broken leg then patients will be less fit than when they broke it so the loss of function brought ON by the disease was suddenly changed into the CAUSE so that their remunerative treatments could be used. A hammer looking for a nail.

And let's leave out the epidemic cases where it was active people who were struck down. They have lied and lied and lied about our disease progress since the first day they got their grubby little hands on it.
 
Mithriel said:
They have lied and lied and lied about our disease progress since the first day they got their grubby little hands on it.
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This needs to be said more. The architects of this nightmare are dishonest, willing to lie and cheat to promote their self-interest. Of course while they have the benefit of the doubt from eminence-based appeal to authority it won't stick but it's true and as such needs to be said. Sharpe continues to lie blatantly in public about what the very objections are, and who is making the objections. These lies aren't even in the past, they are baked-in the entire thing and continued to be repeated.

Lying cheaters will be exposed. They always are, even if it sometimes takes a lifetime. It will look horrible in hindsight and play a significant part in what comes next. A house built on lies always crumbles.
 
hinterland said:
https://www.epsom-sthelier.nhs.uk/download.cfm?doc=docm93jijm4n9647.pdf&ver=23810

At the top of page 2.
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although the Epsom and St Helier website says
Following the publication of the updated NICE ME/CFS guidelines (October 2021), this website is currently under review.

The South West London and Surrey ME/CFS Specialist Service provides diagnosis, management and support for adults with Myalgic Encephalomyelitis (ME/CFS). The service opened in 2005 as part of the Department of Health's chronic fatigue clinical network collaborative to introduce services for individuals with ME/CFS. The Service bases its advice on management on the NICE guidelines for ME/CFS (NG206, 2021).

The multidisciplinary team includes a clinical lead, Dr Stanimira Lazarova, clinical nurse specialists, clinical psychologists, an occupational therapist and a physiotherapist. The Service is based at the Malvern Centre on the old Sutton Hospital site.
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https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome

that information leaflet is still there for download
The following leaflet has been designed to help you understand the condition and advise you on how best to manage it: Understand Chronic Fatigue Syndrome and Getting Started - Managing your CFS/ME[pdf] 559KB
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Thanks for pointing out the above @Sly Saint.

It is clearly at least version 2 from the original ( which was posted before March 2019) because of the reference to the new Nice guidelines.

It lists the staff but Dr Lazarova is merely described as the clinical lead without mentioning her speciality as a psychiatrist. Since the new guidelines state clearly that ME is a biomedical illness, that doesn't seem a suitable fit. The rest of the staff seem of a similar make up to those there for the last dozen years at least.

Now that Dr Bansal is no longer there I only hope that GET is not being used. Activity management took the place of exercise when I first attended about a dozen years ago and I was never advised to physically exercise. In 2016 however when I returned for a single visit, I was offered GET by a nurse practitioner who looked embarrassed when I told her that it was dangerous for those with ME. I didn't return. I wonder what is happening now? What are the staff actually doing?
 
It is 2 years since the new NICE guidelines, and Epsom and St Helier's ME Service has not been updated. Information sheets include the following:

Remember that if you are doing more physically you may get a slight reaction from your body.
This is the same as when a healthy person starts to exercise for the first time, they may feel
great at the time but be stiff and sore the following day. You will need to try and distinguish
between the signals that your body is sending you about when you have over-done it and a
true increase in your fatigue levels. This may not be easy to do!
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What are unhelpful thoughts?
Unhelpful thoughts are those which result in negative emotions and hinder attempts to
manage the situation. For example, thinking “I must not stop until I have finished this task”
may not be helpful as it can lead to overdoing activity, which can increase fatigue and lead to
frustration and anger and further unhelpful thoughts such as “I can’t do the things I wantto
anymore”. It may be more helpful to think ‘I will try to break up this task’.
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As there is no medical cure for ME/CFS, management of symptoms is aimed at breaking the virus, stress,
fatigue and autonomic nervous system cycle, to aid recovery and improve one’s quality of life. However,
making changes is initially challenging but should help you to improve your overall quality of life in the
longer term.
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Using a biopsychosocial model of care provides a framework which addresses all aspects of one’s life to
promote lasting change.
This is achieved through implementing a range of techniques and strategies which include:
1. Cognitive behavioural therapy
2. Deep relaxation/Mindfulness
3. Pacing and grading activity
4. Medications
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Hell's teeth. I am thankful that the service was headed by Dr Bansal around 2009/10 when I completed the programme. I was never offered exercise.
In 2016/17 around the time Dr B left or was absent for a long time for surgery, I was offered exercise with a physio by a nurse practitioner which I refused, telling her it was contraindicated.

I have just gone in to the service through a Sutton hospital ( where the service is located) link, and the following links appeared. The first one says the page is being rewritten following the new Nice guidelines. The MEA seems to be involved.

https://meassociation.org.uk/measpecialist/epsom-and-st-helier-university-hospitals-nhs-trust/

https://epsomandewelltimes.com/event/me-cfs-service-open-afternoon

https://www.nhs.uk/services/hospital/sutton-
hospital/RVR06/departments/SRV0216/cfs-me-management-services/

I wonder what practices they are currently operating while the website is being rewritten. Do we have anyone who is currently a patient?
 
Is anyone aware if Dr Stanimira Lazarova still leads at Epsom and St. Helier please? If not, does anyone know who has replaced her please?
Can find no record of her or or any current org structure / clinical lead for the specialism'. Only Bansal is listed under Fatigue, but I think that is grossly out of date.

The website is slightly updated with a swathe of BACME based 'pacing up' type documents but still biased towards deconditioning, from a first read:

https://www.epsom-sthelier.nhs.uk/new-myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs
 
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