Would you contact the surgery?

[AMindOfMyOwn]

I have ME/CFS and recently had an appointment with a GP. The GP said that the treatment for ME was CBT and otherwise basically symptom management.

The thing is the NICE guidance has changed recently and CBT is NOT a first line treatment for ME/CFS anymore (nor is exercise). I told her but she was adamant that CBT was the treatment for ME.

Now I’m not surprised at all but this is now in my notes as ‘patient was wrong to think that’ (and basically awkward for standing my ground for something that is actually the truth).
Im not happy about it Eg how would it look if I apply for PIP etc… and the Gp reading my notes just sees that.
Plus of course, this means anyone else with ME coming to see that GP will be told the same!

So in those circumstances, would you write to the surgery to ket them know that whatever system they are using isn’t up to date?
For me it is a major issue because for a long time, ME/CFS was basically considered a MH issue ‘solved by’ CBT. Now that NICE has finally acknowledged this is not the case (plenty of research too to show that too) , I feel the message needs to be spread so that people newly diagnosed are not send down the wrong path. But I’m wondering if I’m not going over the top there.

It's not over the top. I'd email the practice manager to tell them GP (name)'s training in this field requires updating.

The worst thing is that she checked!
So whatever system she was using is wrong too :(

What should she have referred you for instead OP?
I think you should also provide info/links to current evidence and guidelines on best treatments to ensure anyone else is given the correct information and prevent referrals for inappropriate treatment

In that case, if you are going to refer to incorrect guidance being issued even when checked, you need to provide the evidence of what you know to be the case. A link to the guidance, or note number. In the case of legislation there would be an act and section number, so whatever exists to give them the evidence to put right.

@Kezzie200 a link to the NICE guidelines are really not an issue!

I think there are two issues.

• training of the GP and access to the right guidance. Telling people with ME/CFS need CBT when it’s not helpful and will make them feel crap isn’t right.


• for me, it’s the fact that the info in my notes doesn’t reflect the reality and might end up having a negative impact on me - esp with PIP etc…

CBT can still be offered for ME, it's just that it's no longer thought to be curative and is thus only a management strategy to help patients cope with the symptoms.

Basically, the new NICE guidance highlights the fact that there isn't really much that can be done at all for ME/CFS, apart from referral to specialist services (which largely don't exist!). I'm not sure you should be cross with the GP for continuing to offer CBT, and it's not really against NICE guidance

Yes CBT is for people who struggle with dealing with their symptoms.

that’s not what I was talking about to her though (And I’ve had counselling through the ME clinic. It wasn’t CBT and the counsellor was REALLY good).
What the GP was proposing was CBT for my fatigue. That’s also how it’s written in my notes….. (Not one word about me struggling etc…).

Saying the NICE guidelines are not against is an issue tbh.
CBT a was touted to be a great answer because ME/CFS was seen as a mental issue (psychological illness…). Not having CBT as a first line treatment is huge. It’s saying loud and clear that ME/CFS is not a psychological issue. So yes I really think it’s essential to address.

Unfortunately, you are right about the lack of treatment. But seeing the 1.7millions people who have long covid and then in most cases go to develop ME/CFS, it’s pretty essential to make it clear that ME/CFS isn’t a psychological problem too.
Already you can see people with LC being told to do some graded exercise which is known to make people with ME/CFS worse. Same with CBT. Why putting 1.7 millions people through the same crap??

A lot of doctors are open about feeling the newer guidelines are wrong and were only changed because of the strong pressure from advocacy groups. N.B. This is not my opinion! When I was misdiagnosed with CFS, I had awful 'treatment' that did nothing but harm and traumatise me. But I'm very aware this is a prevalent view. I would advise not pursuing it as sadly they'll just see it as more evidence of you being a heartsink patient (totally unfair).

Yes I agree about some doctors pov.
Some have change stance though with LC and seeing people having those exact symptoms but very clearly linked with a virus.

The point is though that they have guidelines they are supposed to follow and their system isn’t even up to date!

I would advise not pursuing it as sadly they'll just see it as more evidence of you being a heartsink patient

Tbf, I feel the heart-sink in myself!!

It's so completely rubbish and unfair. I agree 100% that they should not give in to their personal prejudices about any condition.