UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Orthostatic intolerance, dysautonomia and POTS have only recently started to be considereed in the UK as a factor in some PwME.
There are very few cardiologists, adult or paediatric and waiting times are very long, made even worse by Covid.

 

Not much time me for this survey - Friday 11th for Scottish NICE guideline implementation consultation - survey link in tweet thread



https://twitter.com/user/status/1500513568604758021

 

Jo said it best. As far as discriminant validity goes, the research we had access to suggests that the four symptoms of PEM, fatigue, unrefreshing sleep and neurocognitive impairment when present together had the best rates of specificity and sensitivity. So it detects the most patients who are most likely to have ME. This also aligned with the IOM very well, which is why we used that as the basis, with some minor tweaks. (Also, the IOM had the most robust methodology, so there is that, too.)

 

I would argue that applies to all but the most severe, not just those with mild ME.

 

Yes I was a bit 'gulp' for a moment when I saw that idea that anyone could avoid PEM just with pacing. It almost felt like it was said as if it was down to the individual - in which case nothing is farther from the truth and veyr behavioural mindset. Maybe if you lived on a perfect sanctuary with perfect people around you and didn't need to get anywhere that interacted with traffic, others and the various things that go wrong. But people would still get other illnesses and life stresses happenning - people die or get ill around them.

I don't really know whether my ME has ever been 'mild'. I imagine there are unavoidable prime events in life for even the mildest that any adjustments+pacing+planning+everyone around you being very on board couldn't cover for. Now whether that is suggested as 'being unable to do pacing occasions' feels unfair/irrelevant but also untested. Exams, weddings, illness, the obvious of house move/divorce etc.Having ME doesn't exempt people from life. Car breakdown, long flights or journeys, days where you have to do more because something crops up. I'd imagine leeway is given to none of us appropriately. But maybe this is a good start as a major study area if people cared about producitivity and protecting others. Give them enough space by their illness and progression being understood to give them a fighting chance - but it would be to 'not get permanently worse' rather than being able to avoid PEM completely.

Retrospectively there are no options at any level to enforce pacing to the extent that would be required to even trial it. Noone mild is going to be given enough good grace and anyone worse will have such a varying baseline and vulnerability .. grace is given only after the terrible impact is demonstrted. I've noted in my life that once you've got seriously more ill people start being prepared to give the grace that the moderate level demanded - apart from the times they forget and it doesn't work for them. That grace never keeps pace with the actual level of severity. Which is the crux of the illness, you need to give 'more grace' earlier in order for people to progress where the world is programmed to give the veyr minimum and never anywhere near what is asked for. ME is like a ratchet in that circumstance to people who want to shortchange it.

It would be an absolute step forward for the medical profession in slashing the level of debility in the condition if those who were mild were 'protected' with all the seriousness in communications, adjustments and warnings to those surrounding those individuals. But they will still ahve to navigate their health, mental health and other Maslow needs normal people have. And no that isn't changing a 21 years old's mindset with therapy, that's not proper psychology and they need to have the choice to travel or try a career and balance the various things. Instead of most getting to do the career they are brilliant at with adjustments to better hours they get therapy telling them to reduce their expectations a if a lower job is less exertion.

I know that moderate is significantly different life burdens to those around you. How you actually have a life with meeting someone having a family and keeping afloat without massive crashes and risks I do not have a clue. So what is pacing in that context? telling people that having a family or getting a partner or doing a job is their own risk to pacing. All sorts of dilemmas. I do think the pacing thing is a sickening red-herring when I hear it in the context of treatment - it's horrendously 'behavioural' (in an ignorant sense) and sounds like an excuse for our illness to be the only one where we are left with nothing to help to make pacing add up more to a life that is actually livable.

'That's your lot' illness? It's not really that at all when you live in that body. It is clear there is something wrong that doesn't work properly rather than it just being 'underpowered' - so I think it will get ill by itself and if that is how the medical profession or science view it than it is a misnomer. Like telling those with RA or MS to pace. The body itself seems to create more issues that make the rest or doing more interrupted or exertion like and it does mean that without the individual 'doing it' it's no different to someone with an untreated bad ankle ending up with knee then hip issues.

I know that things that are done/happen 'to' rather than by make the difference to severe. They can only conrol what they do and even those are too much when only doing the essential. EVen if those from that outside might claim that were different - the financial and other issues give people little actual option.

 

Well, true, if they continue trying to live a normal life and not pace themselves. It doesn't invalidate my point that all but the most severe may be able to avoid PEM if they can pace themselves, but obviously it will always depend on the individual circumstance as to whether they can, or are willing to.

 

Pacing can help me reduce how often I have PEM symptoms, but I don’t really think it is possible for me to avoid PEM altogether - even now that I am much more mild than I used to be.

Touch wood - I no longer seem to get the type of PEM that means every episode causes a ratcheting downwards of my ME state. But I still get PEM. And I still have that worry at the back of my head that the next episode of PEM might flip back to the much more destructive type of PEM that caused me sustained decline.

I think I am quite “good” at pacing. I have amazing family support, and am comfortably off financially. However, I cannot avoid PEM. Sure after 10 years, I can now manage better, and so reduce its frequency, and intensity, but avoid? No. Not at all.

I don’t see “pacing” as ever being curative. I see it as a way of attempting to reduce further damage, like a holding pattern while we wait for better treatment. Perhaps it’s more like First Aid than treatment - like a splint put on to protect from further damage.

No-one can ever be sure that good pacing will be enough to prevent decline, and it certainly is not something that leads to recovery, even if a few folk might be fortunate enough to have a spontaneous improvement that they attribute to their good pacing.

 

Yes, I'm also in the 'pacing helps but isn't guaranteed' camp. Sometimes, the threshold of what we can do before PEM is affected by invisible things.

That might be a cold, some dust, a couple of minutes' extra interaction with someone you weren't expecting, an unexpected bit of bad news, or whatever.

Sometimes, our body is just using more energy than we expected on a given day.

As for whether PEM alone is discriminating enough--I don't think it is. That's why we have the four essential criteria we do. But criteria without PEM should give us cause for worry.

Finally, I'm undecided about how unique PEM is. I think the problem is that lots of things can look like PEM, but that may not be the same thing.

For instance, if you have an unknown intolerance to a type of food, that can cause a delayed reaction (due to digestion) that includes fatigue, feeling sick or poisoned, and migraine-like symptoms. That would look very much like PEM. Then it might affect your sleep, so the next day you feel even worse.

There's also the chance that people retroactively attribute their symptoms today with something they did two or three days ago, not because that thing triggered what they did, but because they're looking for a pattern to make sense of it.

They may be attributing their symptoms to walking in the park, when it might actually be that they're allergic to the pollen in the park instead.

Part of the problem here is that there's no ongoing monitoring, no continued exploration. Once you get diagnosed with ME, your medical journey 'ends' and that's it. No more tests, no more help, no more consideration. But hopefully that will change if clinics actually do what they're supposed to and offer everyone annual follow-ups.

 

I like the way PEM is being brought to the foreground but that has its own problems. It is not just that we feel bad after exercise, that happens with most chronic illness. The delay is unusual but not unique. The way we get immune problems after exercise is not usual at all but it may not be unique.

PEM is actually a way of describing the outcome of the disease ME/CFS we have. So anyone's leg may hurt the next day if they run for a bus but the experience of someone doing the same thing with a broken leg - my leg is painful today - is not the same.

Using PEM as a defining characteristic has been a big step forward but our problem is we cannot produce enough energy to function normally. In other diseases people can exceed their limit by having to rely on anaerobic energy but we have to do that at very low levels of energy demand.

People with mild ME have exactly the same disease as someone with severe ME in the same way that mild MS is the same as severe MS. The only difference is the amount of energy available without consequence.

All this having to try to explain the disease when we are considered normal in all respects is not the job of the patient but we are forced into it.

 

I received this from NICE:

Dear Jonathan


You will be aware that following the roundtable workshop held on October 18th 2021, which you attended on behalf of Science for ME, Gill Leng, in summing up, stated that NICE would work with system partners and stakeholders to explore:

• Issues around commissioning of services
• Identifying training materials
• Examples of good practice from the patient perspective.

I am writing to advise that we will be sharing an implementation statement with the attendees from the workshop, for comment, next week. This is not a formal consultation.


We are hoping to send you the statement by 5pm on Monday 14th March and would ask that you send any comments by noon on Monday 21st March.


Following input from stakeholders the statement will be presented to the guideline resource and implementation panel (membership from NICE, NHS England and NHS Improvement, Health Education England and, if appropriate, a public health perspective and Skills for Care), for final approval and it will then be published alongside the guidance.


Very kind regards


Heather



Heather Stephens

Senior Health Technology Adoption Manager

 

Thank you for the information.

 

Is it just me or is this commitment

not adequately represented by this?

 

Yeah well I'm sort of not surprised. Certain people will twist anything. I guess that the SEID name, whilst accurate was an issue because some of us saw how the nefarious might use the name to either claim we were useful for nothing or remove the 'systemic' being the intolerant to exertion bit and try and what... what exactly is she suggesting do we think?

The 'Disease' and 'Systemic' bit in that term were always the big steps forward in describing it (from 'syndrome' and 'fatigue' or something not related to any body-part) so of course like some tried to rename PEM as 'post exercise tiredness' (! oh what a laugh for normal people who get tired after a marathon too) might like to inadvertently crop those bits out - if that is what she has done?

 

Can this important development be shared with our Transformation Manager- Alexis Johnys- in Suffolk/NE Essex please?
She is being extremely efficient and proactive in drafting our New Specialist ME Service Pathway and setting up process for further fomalisation.
If you remember, we approached you to see if you would ber happy to be consulted, lend help and advice to this process in she felt it helpful.

I see this to be a really positive step by NICE.

 

I think we should wait and see what comes on Monday. It may be a lemon.

 

What is the purpose of such a statement? Are there usually materials like this published?

 

Hard to say. My impression has been that this part of the process is designed to ensure that NICE is not accused of irresponsible recommendations that cannot be put into practice.

I think there are precedents but maybe only for cases where problems are identified.