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

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."

 

Hi @hinterland Do you have a link for that quote? I can't find where you referenced that.

 

https://www.epsom-sthelier.nhs.uk/download.cfm?doc=docm93jijm4n9647.pdf&ver=23810

At the top of page 2.

 

Thanks.

I read the document. It's a lesson in being careful what I ask for.

ETA: Also now captured on internet archive (wayback machine).

 

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.

 

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.

 

although the Epsom and St Helier website says

https://www.epsom-sthelier.nhs.uk/chronic-fatigue-syndrome

that information leaflet is still there for download

 

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:

 

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?