Response from NHS CFS Service

[ChrisD]

After being referred to the NHS CFS, a year later after Pain, fatigue and suffering, I went through their clinical assessment which identified that I didn't have a more serious disease and by process of elimination; I had ME/CFS.

But after so much promise from my GP and various doctors I saw in my surgery, i was hoping for a bit more than a workshop on resting and an assessment where I felt a bit patronised at times and told that my main symptom (at that time) of balance and dizziness was a perception of balance?! SO feeling frustrated, I penned an E-mail back to my CFS clinic that covered all the studies had made clear headway in the pathology of this illness and treatments that seem to help people, albeit off the beaten path of the NHS. I also feel it is important to give patient feedback so that the doctors know which protocols are working for patients, so that they can open their eyes (and minds) a bit and cause a bit of reverse momentum - maybe it will get those communities talking and change opinions that are set by guidelines and Psychiatric thought leaders.

You can see the response attached in a Jpeg, they key points that I found a bit strange were:

1. 'In this service we only deal with the CFS/ME components of our patients problems' and outlining that they couldn't advise on Lyme and co infection testing, GCMAF, Rifaximin and mitochondrial supplements. To me this is odd because these are all potential components of ME/CFS.

2. The fact that I got the doctor to acknowledge that there is such thing as GCMAF and that it exists in a medical environment.

3. Recommending that I reduce High dose Vitamin C - which some may have seen in other forum posts to have helped reduce inflammation and improve my symptoms massively. Therefore this seems a bit counter intuitive but of course doesn't fit their legal guidelines to advise on this.

4. That they mention that other symptoms and ideas about the nature of my illness should be taken up with my GP! Well I have only spent a year going to my GP almost every fortnight and being ignored, patronised or dismissed on all of these things, and being told that I should look forward to getting on the CFS specialist service! I find myself going round in circles!
GP's I have seen are under the impression the CFS service is this magical practice that orders all kinds of functional tests and can make clear diagnosis ( I went back to my GP and made it clear this wasn't the case) - She had told me that I would be able to have further Lyme testing and various other tests there.

5. ''I hope you are able to attend our REHABILITATION programme'', I find this fairly self-righteous and also it makes association to addictions and psychological illness. What do they believe they are capable of?

Does anybody else have any thoughts on this? It seems that the NHS get more and more out of touch every day, even with each other!

I will be replying to them, so would appreciate any ideas on how to reply.....

 

[Spindrome]

I had the same experience. You are completely right about GPs believing it's fit for purpose, Ive been dismissed a number of times when I've tried to explain that the ME clinic/treatment was not appropriate.

The ME clinic I went to didn't have a doctor, I saw a therapist who didn't even think I had ME even though I had been diagnosed by an ME specialist.

This may or may not be relelevent to you, Someone posted on facebook the other day that

the use of a heart rate monitor appears in the NICE guidelines as part of the treatment and management of CFS/ME. What the guidelines say is not completely sensible because they only talk about using it in the later stages of Graded Exercise. But what is significant is the recognition that a heart rate monitor gives an indication of acceptable levels of activity for CFS/ME sufferers.

I can give you more info if you are interested. The ME clinic I went to did not mention this at all. Which I find odd, especially because of the controversy surrounding Graded Exercise and the potential dangers. They were also asking me, a severe patient to walk as my exercise when all the research (which we all know is poor) was carried out on mild/moderate patients.

They also weren't interested in any supplements they just tried to educate me on sleep, nutrition and activity which I already had covered.

 

[ukxmrv]

I love the end of your first sentence it says quite a bit

...I didn't have a more serious disease....

When you do really have a very serious, disease with little in the way of treatment and low recovery rates. How "not-serious" is that!

This is all part of the way these clinics frame things in order to manage you.

Arguing with them in my experience is pointless. They have a set of fixed and unhelpful beliefs around the disease and they are not going to change them regardless of the amount of information given.

Something to consider is to make a complaint to the local group who commission these services but I suspect that they will only quote the NICE guidelines at you.

GP's want to get someone, anyone to take us off their hands. They may know deep down inside that this is not OK but the only place to send us to.

If the clinic can get you on the rehabilitation program then you may either be brainwashed, relapse so badly you cannot leave your home, never want to see another doctor again or give up and seek private care.

You simply won't get experimental treatment on the NHS unless you see one or two quite specific doctors who will sometimes offer different things and have an open mind. Even then it's going to be crumbs.

My advice would to get yourself into the care of the best possible NHS CFS clinics you can find. Take the few crumbs that are offered there and then, learn as much as you can about treating yourself. Pay for whatever private care you can and buy drugs from abroad when needed.

Personally I would complain about the approach of the clinic in writing and with a copy to your GP and the local commissioning group. So many of us are treated badly but unless we stand up and say so in writing then they always get away with this and pretend that patients are happy with the clinics. It would be great to be able to do a FOI request of different areas at some stage and see how many patients actually do make a formal complaint.

 

[Snowdrop]

The ME clinic I went to did not mention this at all. Which I find odd, especially because of the controversy surrounding Graded Exercise and the potential dangers.

Odd to you and I maybe because we experience this illness and know (or if we don't we learn). And ME sufferers are the ones making noise about how it doesn't work the way they say. That hasn't stopped them.

Expert clinics in the UK are fully invested in the psychosocial model. The psychiatrists own this disease and are powerful and well connected. From Eton to the Elite Universities they all know each other and have each others backs. Their interest is not you and me but how much money they make through grant research, private consulting/speaking gigs, and stakes in insurance and private clinics no doubt (all held at arms length surely).

To them the only danger is to you and that is an inconvenience only.