NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

This may be true. Nevertheless, I do hold out some hope that what NICE says may impact the prevailing view. I think that if new guidelines make it clear that ME is not just unexplained symptoms that can be shunted off to a therapist team for treatments with no evidence base there is some hope that at least some parts of the medical profession may stop and think.

There needs to be public debate to get traction on that and if the media continue to be unable to engage usefully things will be tough going. But those who have got involved in this debate are not I think going to go away quietly - people like Brian Hughes.

 

Well, another problem is 'modern' surgeries just assign patients to random GPs as their 'named doctor' on the practice system, despite the patient seeing a completely different one as their chosen, regular doctor.

Whenever the hospital consultants have written to 'my doctor', the letters are addressed to male GPs I've never heard of (often a different name each time), GPs that I have never had an appointment with. Certainly not the female GP I've been seeing regularly for several years, trying (against the odds) to build a relationship with so they can understand my specific difficulties - the one who actually referred me to the consultant(s) in the first place. When I ask the hospital to correct this, they say they can't because it's who I'm listed with at my practice. When I ask my practice to correct it, they tell me 'it doesn't matter', or 'it's irrelevant'.

GPs no longer take individual responsibility for each of the (longterm) patients they see anymore, it seems to have become diffused across the practice, with patients being assigned their 'named doctor' randomly by an administrator, presumably whatever helps them in balancing the practice's 'GP patient lists'.

Patients with severe, chronic conditions, especially those who have difficulty accessing services, need continuity of care and regular monitoring/reviews. We aren't getting that.

 

The scope has been published and monitoring and review were topics mentioned there, so I'm allowed to say that we're definitely looking into these things.

 

I absolutely agree - there is definitely something wrong.

 

Also responding to @rvallee ’s post


For those who (have to) attend hospital alone, I hope that the guidelines review committee could discuss the probable effects of this on the patient and consider what adaptations could be made so as to make the consultation more effective.

Maybe pwme could be asked how they will reach the clinic, journey time and will they need to rest on arrival. Strategist ‘s suggestion could be implemented.


I have many hospital appointments and am very grateful to have a companion with me for all of them. It makes it indescribably easier to manage the journey. I am driven, and the car parked, then wheelchaired to the clinic waiting room.

In the waiting room I can use my wheelchair as a footrest to keep my legs elevated. I am pushed into the consulting room and am then ready to face the appointment with a degree of concentration unless the wait has been so long that I am wilting.

I do go in to see my GP alone but am driven there even though I could drive myself the short distance.

It saves on energy. It saves on energy which I can put into the appointment, giving information, ensuring that I cover my list and making sure I am communicating well with the clinician, understanding and responding to what is said.

Helping facilitate accessing of services in a reasonable state for those pwme for whom this is possible is a necessary step forward.

ETA: @adambeyoncelowe @Keela Too

 

But it's not about convincing doctors and other health professionals whether ME is 'real' (mental illness is real as often quoted by SW et al), but about the NICE guidelines explaining clearly what having ME (or ME/CFS) means for a patient, that it is not just 6 months or more of 'chronic fatigue' - the nature of PEM and other common, severe physical [edit: and cognitive] symptoms need to be be spelled out and their impact on the patient explained. The guidelines need to make it beyond argument that ME symtoms are not due to deconditioning and that patients do need physical help and care to prevent progressive deterioration, as well as pro-active and consistent health and care monitoring.

As they stand there is no 'meat' in the NICE guidelines to even argue from. You're better off trying to explain your symptoms to a doctor without reference to them at all (in contrast, to say the new autism guidelines, which also advise on how CCGs should set up and monitor the quality of services).

GPs do need to be held to account with regard to their responsibilities in caring for moderate-severe patients, the ones they rarely see in the surgery. When I was seeking support from a previous GP in relation to having to go on sickness benefits (after nearly killing myself trying to work part-time) she said, 'Well, I see a number of patients with CFS and they're all able to work....they may have given up all their social life and hobbies, but they're all working full time.' Clearly she had never cared for an ME/CFS sufferer with more than a very mild type of 'CFS' - and no wonder with that attitude! Who would go back to her after being judged as a 'skiver and shirker'?

I'm not naive enough to believe a revised NICE guideline will in and by itself change these types of entrenched negative judgments. However, if we get a guideline that is powerfully and specifically worded, it can then be meaningfully used in advocacy (both in individual self-advocacy and in collective patient group advocacy). I agree with JE - this revision has the potential to eventually bear fruit. EDIT: If the final version is well worded...

 

Is NICE going to be able to do what was done in USA & categorically say this is serious illness with many suggested physical abnormalities & that is not psychological, and psychological therapies of only limited value?. I know some don’t like that type of talk and ofcourse we don’t have solid evidence base yet, but there’s enough there for IOM report, enough there to convince USA researchers to bother wasting their important time and set up units at Harvard etc, if We could all be rehabilitated, therapies better there would be no point. My problem with NICE ‘real” , Believe, support statement is Simon Wessely & Michael Sharpe use same language, it means nothing it just means you get a sympathy pat on the head & a CBT get referral.

I also think if NICe is looking to convince regarding physical nature the sickness symptoms and potential frailty need to be emphasised as supporting this physical illness model as well as CPET tests etc.

It needs to spell out the symptoms cannot be explained by deconditioning, and that psychological evaluation is usually normal and the limits of rehabilitation potential for this illness.

 

Journalists that believe everything Wessely and co say without question are a problem.

 

I actually think 'physical' is no better than 'real'. They mean the same. Wessely would happily say the illness is physical.

The problem I see is that if claims are made about physiological abnormalities that do to stand up then it will be very easy to level the same criticism that has been levelled at IOM - that it has bowed to patient pressure.

As I have said before, if you want to convince the average doctor to take ME seriously you need the arguments to work on me first - because I am much more amenable than most!

But for me the argument that ME needs taking seriously comes from the clinical presentation not from any preliminary lab findings that by and large never seem to stand up.

The only thing that has any power here to change the agenda is actual evidence. Everything else is people's opinions and politics.

 

There's hardly a better way to destroy the credibility of a condition claimed to be a serious, incurable neurological disease by its sufferers than hyperbolic claims that positive thinking and exercise is very helpful and can even cure a significant minority of patients.

 

For me the evidence is inscribed in my body!

 

Especially considering the muddying being done about how CBT is "helpful" for cancer, whatever helpful means in that context as it's most definitely not even remotely close to the claims beings made about ME and MUS in general.

The conclusions from PACE and similar research that medical professionals and institutions adopt is that CBT/GET being helpful is the clincher that means ME is obviously strictly psychological, end of discussion. Even though it "helps" cancer patients, Sharpe's BS deflection, somehow without the argument that this means cancer is strictly psychogenic. Same context, different conclusions. Because other factors, so what are those?

Those other factors at play, I think, are behind the scenes, relating to the NHS treating ME strictly as psychogenic, organisations like Cochrane arbitrarily reclassifying ME as a common mental disorder and medical training either being non-existent or based on disinformation from failed trials. A main feature of which is obviously the influence of Wessely and Gerada and their influence promoting their belief systems within the institutions of medicine.

Those things we seemingly have no control over and have no issues completely ignoring the entirety of the NICE guidelines as they see fit. The entire MUS project is mostly built on deceit, saying one thing while obviously meaning another. There are fundamental issues at play, that relate to the very integrity of science, the reliability of evidence in medical research, such as being fine with unblinded trials with self-reported outcomes and adaptive methodology as long as it achieves a predetermined goal.

It's critical to be able to affect those issues that directly threaten the very credibility of science in the pursuit of clearly ideological goals. If only people cared about such things are integrity and objective evidence describing reality rather than easy, convenient answers supporting pre-existing beliefs.

 

There's an opposing opinion I've heard before. That's the belief that if we keep mentioning 'it's real' and 'it's physical', that reminds the reader/listener that some people think it's not real. Then they start to wonder if it's not real, and if we're overcompensating.

Think of Tom Cruise. The more he said he loved his wife (Katie Holmes), the more people didn't believe him. And lo and behold, they divorced, and there are still whispered rumours he's gay.

I'm not saying this argument is the right one, but I think any discussion around this needs to be nuanced. Sometimes what we deny can be as powerful as what we assert.

 

New email from NICE

Dear registered stakeholder,

RE: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

We have extended the deadline for the submission of evidence to 5pm on Wednesday 16th October 2019.

Please follow this link here for further details on submitting evidence.

Kind regards,

Kate Ashmore | Project Manager
​

Thread title amended to show new deadline.

 

Just been through to the team that are working with children to find out about what they need from the guidelines to say i was impressed is an understatement.

It would seem that they are changing to suite the child and the parent. They understand the fluctuation and the problem with PEM. I explained that Angus can only do 15 mins and the PEM is severe for a week. They have accommodated his needs and when they talk with him it is with utmost respect, as he said "I have never had that before, ever." Please tell those involved that was the most amazing experience to see his face after that.

They are looking at experience of the first encounter and the continuing care. So they are looking at identification and assessment before diagnosis, when you are diagnosed what that was that like, what help was offered and what support. What helped, what helped with school and staying in touch with friends and what they were told about their condition.

Best questions for a young person "If you had a fiend with the same illness"? and what would you go back and tell yourself.

The parent questions are separate and in the region of 40 questions.

The sad thing is that it only includes England and Wales, but that is not their fault.

Like @adambeyoncelowe says though it does not matter if the Drs ignore they can and do, however soon the NICE guidelines will become more than just guidelines and hopeful the GMC will take a dime view of things are ignored or played with as they have been and this information should form a leaning background that becomes both reliant, usable and safeguards patients. I am now more hopeful.

 

I assume this is all a response from the NICE data gatherers.
My impression was that they are taking things seriously. It is so easy for good intentions to turn into handle turning but like you I am getting more hopeful that sense will prevail.

 

This is good to hear @Tilly .
Can i share this post with a closed facebook mum's group to try and ensure engagement happens?

 

Email from CureME has been received confirming that they will be submitting their published papers for consideration to the NICE committee.

 

NICE committee members please take a look at the following thread (if you haven't already):

https://www.s4me.info/threads/work-...strategies-2019-vink-et-al.11398/#post-203183

 

And equate it for children. Time out for 6 months without pressure would make a huge difference.