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

Dr Bansal has been replaced by a psychiatrist, Dr Lazarova, who specialises in eating disorders and other mental health disorders.

Further information on the link below.

https://cognacity.co.uk/profiles/dr...i2OBzHfTf3Sg_1AhFsjlSbCgv-6ldEHaW91dd9ix9No5M

What is Cognacity?

ETA: the link to clinical Cognacity is down

ETA2: a private sector psychiatric organisation?

It just gets worse.

 

What happened to dr Bansal?

 

I'd like to know too.

 

This is very revealing. Perhaps enquiry should be made of those commissioning this service as to under which of her purported areas of expertise they consider ME to fall: (ruling out unlikely ones) womens 'mental health, affective disorders, anxiety disorders, adjustment disorders, stress related mental health disorders.

One cannot blame a doctor for having those areas of specialism or interest. Were there no applications from anyone interested in ME?

 

Oh dear, this isn’t good news at all... Bless Dr Bansal, he was a good man who helped put my GP on the right footing. I heard he will now be focusing on his research interests.

As you say, the new appointment is very revealing about how the powers that be perceive ME/CFS, or there were no other better qualified candidates for the job. My life just got more difficult.

 

For anyone reading who doesn't know Dr Bansal or where he was working:

https://www.epsom-sthelier.nhs.uk/consultants/?consultant=234

 

I was disappointed when it was posted on the MEA wall Dr Charles Shepherd just responded with a bland we would be interested in hearing feedback from people who use this services not actual comment and presumably no action before or after , although we knew the position stated it was open to psychiatrists to apply. On the same thread a psychiatric nurse who had had to retire due to ME said she thought the appointment entirely unsuitable

The problem is with CFS and MUS, liaison psychiatry has first choice as service leaders and most interest whilst no one else will touch us . All part of the crazy set up.

 

Chalder has been trying to link CFS and eating disorders for some time, so this is a natural fit - from a certain perspective.

 

I can't really remember the details and don't want to risk misleading people, but there were a series of studies like this: https://www.ncbi.nlm.nih.gov/pubmed/21810109

 

He has retired from the NHS but was planning to continue with some of his private work. My understanding is that Dr Lazarova has taken over running the CFS service at Sutton Hospital but nobody has taken over Dr Bansal’s ME/CFS clinic that he ran from the immunology department at St Helier hospital. I understand that it was determined that they would be have been unable to fill the post if the replacement immunologist was required to take over Dr Bansal’s ME/CFS patients – because his CFS clinic was full, Dr Bansal saw ME/CFS patients in his immunology clinic too.

My understanding is that part of Dr Bansal’s motivation for retiring from the NHS was to enable him to spend more time doing research. He since he took the decision to retire he has had some health problems. I’m not sure if that is will inhibit his return to private work and research.

 

I think that the problem is with the people behind the service who regardless of Bansal who’s physician credentials and biomedical research interests seem more coincidence, are full on BPS subscribers and made it clear they’d accept psychiatrists for the role despite surely being aware that is against “service user” wishes. Really some form of circulated and signed letter to them might be worthwhile expressing patient disquiet. The service previously was one on the few semi decent physician led ones in the uk and i think that bansal was helpful to severe patients even though there wasn’t funds for a proper service.

 

Dr Bansal retired from the Sutton service at the end of last August. He has continued with some private work as a ME Consultant.

As @Robert 1973 says, his plan was to do some ME research but i’m not sure that this is started because he did have health problems and was absent from work for a time around the time of his retirement.

ETA: @chrisb - I wondered if they had had applications from ME literate doctors but have read on a forum that they advertised for someone with BPS skills. This is outrageous but in the recesses of my mind, I have a recollection that this might be a one year appointment which I suppose might be extended to fit with Nice results.

ETA2: Makes the guideline development group outcome so crucial.

 

Some more information about the Sutton CFS service

https://www.epsom-sthelier.nhs.uk/c...ieZQu3G1-EN8RAm4gN5IdCZaUNmkOKD202t1MydLRdyr0

 

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

 

The link appears to be working now.

From the Cognacity website:

Fortunately ME/CFS is not on the list of conditions they treat although I suppose they would probably lump us in to this category:

• Psychological problems related to chronic pain, cancer, head injury, etc.

 

I took ill at 14 and experienced classic ME symptoms. I had fatiguability, doing fine then flat on the floor, no temperature regulation, neurological symptoms, double vision, dropping things, headaches and a general feeling of being ill.

But, I was not old enough to know what adults felt and assumed everyone felt as ill as I did and I was just a wimp. I lived a normal life and hid much of the strange symptoms, like light and noise sensitivity and transient paralysis. I would dive into the bathroom when I felt a seizure like episode coming on, let everyone assume I was too vain to wear glasses because I could not see because of vision problems.

During this, I experienced great pain in my legs, back and especially wrists when I was writing in class but being from a family where lying down to illness was the greatest crime I just put up with it, not through any sort of bravery but because I thought that was the way the world was. I managed to evade PE for almost a year as the teacher mixed me up with another girl (Yay!) But I worked on Saturdays, went to school, went out and walked everywhere, including 25 minutes each way to school (I hated buses and couldn't afford the fare after school rates went off.)

I was never deconditioned and had no anorexia, rather the opposite as eating gave me a boost that helped me carry on. Until this is understood then no one is going to make sense of ME.

Since CFS put everything on fatigue all the other symptoms which affect us have been ignored, yet Ramsay understood that ME affects people differently and the common thing is that their bodies don't work not feeling tired.

Edited to say, the important thing is that it is not possible to keep up that level of overactivity. I did it because I knew no better, now kids will be doing it because it is a "treatment".

By the time I was 17 I was collapsing as soon as I got in the front door as will power was no longer enough. My life was destroyed though I have been luckier than many it was no thanks to the medical profession

 

That sounds a bit similar to myself. What you’re saying is that you experienced symptoms odd, disturbing symptoms prior to prologued rest so it makes no sense for this false model to perpetuate let alone dominate

I think that as a patient group we really need to start proactively challenging all these occurances because added together it’s a wall of misinformation. We can’t have this being given to patients and drs in the uk whilst Americans have the IOM validation.

 

Exactly Cinders. I had been ill for 16 years before I could be said to be deconditioned at all and another 5 before I became wheelchair bound. I think I managed because I had young kids and did not work so I did things in the morning and rested while watching themin the afternoon, but by 9 o' clock at night I could hardly walk and needed helped up stairs.

We tried to say that when CFS started to be bandied about, patients and medics but we were drowned out by weasel and cronies.