NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Valerie Eliot Smith blog on draft

https://valerieeliotsmith.com/2020/...TjuXT7-isNWf38t8DDpSMbLYL8DOltfxBgQP_pIjXdlYU

 

Has anyone seen any mention of indigestion as a symptom of ME/CFS? I believe it is common, and can be triggered by trivial things.

 

I think the nausea section is good - I think it could go further about symptomatic relief like you mentioned, but the fact it mentions eating smaller meals, spread out throughout the day - is a really good piece of advice, I only learned this after joining a few PoTS groups and finding out about gastroparesis. That could help lots of PwME.

And that’s what I mean, there’s probably lots of bits of information in the guidelines that could be really helpful to PwME - improve their quality of life quite a lot, all added together - and which probably would still not come under “do no harm”. I haven’t gone through the guidelines in detail. And even if it says the word “may”, that’s still in the guidelines, and its based on committee experiences.

I really think if S4ME goes down the line of picking apart the guidelines based on the fact it’s based on committee experience, for whatever reason - there are going to be quite a few issues like this, you would need to go through the guidelines extremely carefully and meticulously to check which parts say they are based on committee evidence, and which parts could therefore get taken out, and it really worries me. Then there’s the fact people would have to agree which parts of the guideline come under “do no harm” and which do not. There are so many potential issues and having so many good things in there right now - I am extremely worried.

There are so many other issues S4ME can point to about the increasing activity section, such as the harm of GET lite, without having to do this.

 

Not sure if relevant to this guideline, feels like it should be somewhere, maybe in the glossary section for Mild ME/CFS. Often overlooked when considering the feasibility of continuing work. It is not just about what a person can do, but the unpredictability of what they can and cannot do and when. It is very hard for employers to take on an employee who cannot know what hours they can work, when those hours might be, and how effective they may or may not be during working hours. And it is in turn extremely humiliating for an ME/CFS patient when knowing they cannot make the necessary commitments.

 

The trouble is, the converse could be true for other patients. They might find that eating 3 regular meals helps reduce their nausea. In another part of the guideline it states there is no evidence to recommend a restrictive diet, but these also help some patients. So really, I think some of these 'patient suggestions' (which are not part of the submitted formal patient survey evidence) should be left to patient support groups or forums, rather than being in guidelines that are written for healthcare professionals. NICE guidelines are not intended to be primarily designed to give idiosyncratic advice or cover every management tip that could be helpful to every patient. The final version needs to be internally consistent if it is to be taken seriously by doctors and consultants.

However, when it comes to being prescribed symptomatic relief medications, patients depend completely on the medical profession to be able to access prescription drugs. So this information does need to be covered in the guidelines or we risk being left with severe symptoms, pain, nausea, headaches etc., that could be alleviated with the correct meds. For some patients being denied symptomatic relief could lead to them choosing suicide as a way out of their suffering.

 

The NHS website for nausea has recommendations including drinking regular small sips and also to eat small spread out meals. This may well be where it’s come from. I do agree about adding symptomatic treatment.

Nausea is one example, out of many others I gave including orthostatic intolerance, physical maintenance, heart rate monitoring, training, a substantial section on dietary strategies, flares - could all of these come under “do no harm”? A lot of these are also patient suggestions / patient experience, too. In addition to those, I’ve just gone through the guidelines and found even more sections which say committee experience was used in making the decisions - sometimes in more than one place - including principles of care for people with ME/CFS, suspecting ME/CFS and maintaining independence.

So if S4ME want to say the problem is with committee experience, and it should only ever used in places where otherwise the patient would come to great harm- it is going to have to go over with a fine tooth comb - every piece of advice in the guidelines and check every bit to see if it says committee experience is used, then figure out what to do about it, put together a submission which argues patients really would come to harm if these pieces of advice weren’t there (under the “do no harm” principle) and argue that’s why these should stay despite saying committee experience. And that includes things like heart rate monitoring and OI etc - which may be hard to argue for, since some people don’t even get help for that currently and haven’t necessarily come to great harm.

So I really am sceptical using this argument is going to be helpful in general, not to mention something really important could get taken out, and people here don’t actually know that it won’t - since no one has actually gone over it with a fine tooth comb yet. I really don’t think this is a good idea.

Edited to add examples, and edit paragraph 1 about NHS.

 

In case it’s of interest, the Leonard Jason team have published some studies of various sizes which found evidence for the energy envelope approach

 

Not to mention, we would then also have to look at all of our recommendations in the submission - and if you look at the running commentaries on the threads, a lot of those are just based on our experience, not necessarily published evidence - and we’d have to make sure those wouldn’t be thrown out as well, under the ‘no committee experience unless it comes under the “do no harm” rule’!

 

@Simbindi - I’ve mentioned this in the relevant thread.

 

Sorry for just throwing things into the convo, my brain fog is bad at the moment, but i really care about the outcome of this. Hoping the scraps of my thoughts might help someone who has a clearer head...

Thinking about the new guidline's advice on therapists helping ME patients exercise but only when they want to or feel able to, in a non-GET way... is this necessary? e.g. if i am well enough to do more, i just do more. I think as others have said, the hard part is not doing more when i can, it's not doing more when i know i'll pay badly for it.

Then, when you add in who these therapists "with lots of experience working with ME/CFS patients" are, then it will likely be those who've been gasslighting us for years. So why on earth would an ME patient want to see any of these people. And if NICE are now saying that what these so called "experts" have been doing is wrong and no-longer recommended, then how can they be said in any real terms to be "experts". So who are these experts NICE talk about? What qualifies someone to be an expert in this context? If it's not them, then surely it will take years to train up new therapists who are actual experts, and that requires an educational overhall...

 

“Loopholes Need Closing” – ME/CFS Draft Guideline Community Discussion
https://www.meaction.net/2020/11/18...-me-cfs-draft-guideline-community-discussion/

 

Lovely. A comment worth remembering!

 

I completely agree and there needs to be proper, regular checks on all these clinics to ensure they are indeed upholding new guidelines and not carrying on as usual on the sly.

 

When these practitioners talk about "central sensitization" they're not at all talking what you're talking about! Its a new(ish) euphemism for "psychosomatic", and refers to the idea that there is nothing in your periphery that can explain of your pain/fatigue/malaise; they are somehow constructed in your central nervous system (mainly your brain) through learning. They are therefore amenable to change by behavioral interventions.

Need to find a way to explain the noise and light sensitivities in a way that does not feed into this meme.

 

The more I think about these severity level labels the more I think they should be scrapped altogether.

They can be applied to the individual symptoms as per most other illnesses eg pain, fatigue
but as an overall label they can be misleading.

I would like to see a disability scale similar to that used in MS adapted for use with ME
https://mstrust.org.uk/a-z/expanded-disability-status-scale-edss

 

To my engineering brain this just feels like common sense. For any one person, each kind of activity (using that word loosely) will have a given energy limit at any given time. If you could do a multi-dimensional graph, one dimension for each activity, with the limit of each activity marked, then they would all mark out a person's energy envelope at any given time, the envelope marking the various limits for the various activities. The envelope would vary, as the person's energy limits changed.

Viewed as an engineering exercise, it looks very complex and daunting. But it is the sort problem that human beings take in their stride all the time, sometimes completely instinctively, sometimes with a bit of training thrown in for good measure. I'm pretty sure my wife paces herself by instinctively working within her energy envelope, without ever perceiving it in that way - human skills have no need to understand how or why they work, the just do. And for skills where you need a bit of professional help to get going, then it still ends up the same way - learning to drive for instance.

 

Fully agree. Somewhere else in these threads (sorry, lost the plot where) I've said that the guideline should make very clear that whenever it refers to ME/CFS therapists/experts, it should very clearly state that those therapists must be fully conversant with, full trained in accordance with, and fully adhere to, this new guideline. Otherwise it will be a cakewalk for the old guard on business as usual whilst just paying lip service to the new guideline.

Indeed it is their experience to date that, for most therapists, would disqualify them without full retraining.