Collecting papers on Evidence Based Practice for ME (plus distinction from FND)

[Jonathan Edwards]

How do y'all recommend I talk about Pots in the letter?

I am not quite sure what the purpose of the letter is but I would personally avoid talking about POTS because I think it is a mudded term that doctors think they understand but don't.

Postural orthostatic tachycardia is a measurable event but it is very unclear whether there is any 'syndrome' that goes with, or can be attributed to POT. Most of what is bundled into POTS sounds pretty much like ME/CFS.

I suspect doctors like diagnosing POTS because it is a name they can attach to a specific symptom and it is a way of giving the impression they know something about what is wrong with you.

The more I hear about it the more I think it is a term best avoided.

 

[ElephantNerd]

I hear you! Personally I've found the term Pots helpful when talking with docs (better than saying ME), and providers in my field may encounter patients with the label. But perhaps it is best to avoid the term in this letter to the editor.

One last thought: providers in allied health do not diagnose, but we do receive patients with many kinds of diagnoses. It's not our job to diagnose, but we are responsible for helping them with management such as energy conservation strategies among other things. So any research on energy management benefits in ME would be helpful for building up my toolbox in communicating about ME.

 

[Jonathan Edwards]

I hear you! Personally I've found the term Pots helpful when talking with docs (better than saying ME)

Why not try something that actually has some medical scientific validity though, like ME/CFS?
Doctors will play the 'POTS' game because it seems to have some 'medical' rules, but the reality is that nobody has anything useful to say because there are no decent studies. If nobody actually knows what they are talking about is it really 'helpful'? As healthcare professionals we encounter people with all sorts of labels but there isn't always a good reason to go on using them.

It's not our job to diagnose, but we are responsible for helping them with management such as energy conservation strategies among other things.

What is an energy conservation strategy and what is the basis for recommending it? We don't have any basis for recommending 'energy conservation' for ME/CFS as far as I am aware. There are no studies that I am aware of that test this and I am not how you would do it? As we are at the moment we don't have a toolbox for ME/CFS (ME I think is an outdated concept) beyond advising people to benefit from the experience of other patients in terms of not pushing through when exertion generates adverse payoff.

It really would help to know what role you are wanting to fulfil?

 

[Utsikt]

Advocating for pwME while having ME is really exhausting, even just writing a letter to the editor of a magazine, and just knowing you all are helping me figure things out is helping me feel much more confident and less nervous/angry/alone.

This is why I think that waiting for DecodeME (and a couple of months for people to assess the findings) might be beneficial. Essentially, take the time to continue learning as much as possible, save up some energy, and capitalise on the collective knowledge and expertise that will put the arguments together for/with you.

 

[bobbler]

Sure! EBP stands for evidence based practice. Apologies for using a jargony abbreviation!! I will try to fix the title of the thread.

Also what a good point about joining existing advocacy efforts! I'm pretty sure there is no existing letter to tag along with in this specific case.

A well read magazine (not a peer reviewed journal, just a magazine) aimed at medical professionals in my field recently published an article summarizing current best practice treatment methods for patients with FND. There is a paywall to their article.

I’m not refuting their article or anything—just writing to the editors encouraging them to at least keep the misdiagnosis nuance in mind for future articles on the topic of FND. That way, clinicians can try to keep their eye out for if FND based strategies may not help certain patients in the longer term, and refer these patients for further testing instead.

They also stated point blank that there is no physical disease process in FND, and I want to gently encourage them to be a bit less definitive in stating that, since all we know is a physical process hasn’t yet been found. (If you think I should back off on that point, let me know! I don't want to overstep.)

I’m also secretly hoping the magazine may choose to write (responsibly) about MECFS and Long Covid in the future, since sometimes these patients are referred to providers in my field as well, so I’d like to enter the conversation equipped with sources to send them. I’m a little afraid that if they search for best practice for MECFS and long covid they may stumble onto CBT GET LP etc, and I’d like to steer them away from that stuff if I can.

Is this helpful context info?

thank you. I've been slow to respond and there are already a few good responses already I see, so will read through those first and think carefully before I add anything.

This is a tricky topic that feels like it increasingly impacts ME/CFS (pwme getting diagnosed with FND instead is an increasing risk due to certain things, not all of which are necessarily accidental), but has been as usual made into a minefield to respond on without falling into certain traps set.

It's very sensible that you are taking on board as many minds as possible in how to tackle this one.

 

[Utsikt]

OI (orthostatic intolerance) is probably better, because it simply describes the consequence - you have issues with being upright.

It also makes it very clear what kind or accommodations that might be needed - being able to lie down, have a zero gravity chair, etc.

 

[Trish]

I think there are tips you can give to pwME to help them avoid PEM, which is the purpose of energy management.

Things like using step and heart rate monitoring alongside noting how they feel each day and when they are crashed, getting as much help as they can with daily activities, learning to say no, breaking up activities with rests, and not expecting to be able to plan ahead any activity and stick to plans. Also learning to recognise what tends to trigger PEM for them, including the understanding that the cumulative effect of exertions and sensory sensitivities over a day or more can trigger PEM.

Also helping them get access to work or school adjustments if able to continue, or disabilty benefits and care provision if not.

 

[bobbler]

I think there are tips you can give to pwME to help them avoid PEM, which is the purpose of energy management.

Things like using step and heart rate monitoring alongside noting how they feel each day and when they are crashed, getting as much help as they can with daily activities, learning to say no, breaking up activities with rests, and not expecting to be able to plan ahead any activity and stick to plans. Also learning to recognise what tends to trigger PEM for them, including the understanding that the cumulative effect of exertions and sensory sensitivities over a day or more can trigger PEM.

Also helping them get access to work or school adjustments if able to continue, or disabilty benefits and care provision if not.

Yes - from eg reading the OH professional organisation stuff I remember them changing their document from 'energy conservation' to 'energy management', actually around a year after the pandemic if I remember rightly - and that obviously for them meaning something regarding strategy and belief in what the illness is.

Whether those writing or receiving that realised or not or were just being 'sold' some 'ideas that might be helpful' as a trojan horse that made their literature go backwards rather than forwards.

The one thing that I can conclude is that (whilst they will try) the term 'energy conservation' is slightly harder to distort and abuse than the ambiguous term 'management'.

SO I understand usage of that term [conservation] so that people can't just take/read what they want from it, and because as anyone who has any sense of science or professionalism you'd avoid ambiguity to ensure everyone was at least talking about and studying a similar thing. Vice versa I think usage of and switching to ambiguous terms can only be in order to introduce fuzziness and cause such complications, given the long journey everyone has been through therefore don't have the excuse of not knowing better on etc.

If they mean 'pushing through' or 'fatigue is in the mind' then they should use a term that is honest, and genuinely measure it properly (holistically ha, ha) and be properly accountable and eyes open so not wilfully ignorant of the impact/consequences of that if they push it onto patients?

Examples are that instead of focusing on the however many 'P's' some like to use - prioritising, planning etc. the newer document was creeping in ideas that would only be useful for someone who wasn't ill but wanted to gee themselves up out of feeling unmotivated or a well person who felt a bit flagging.

The equivalent of suggesting people had a strong cup of coffee to wake their brain stuff. As if that 'cured' or'managed' the fatigue they perceived the plight of ME/CFS to be. Where the prior document understood that there wasn't a 'magic energy tree' and so people had to make choices and use their energy wisely.

 

[Jonathan Edwards]

Things like using step and heart rate monitoring

Do we know that these are useful, @Trish?
Until we have some longitudinal actimetry studies, as we have discussed in the past, I am not sure how we can know these things are important. Physiologically I cannot see any particular reason why either one or other should be important.

Posts discussing this further have been moved to
Using Heart rate monitoring to help with pacing.

 

[JemPD]

Sorry I can’t read the thread but you might find this study into general misdiagnosis of other illnesses as FND, helpful https://www.sciencedirect.com/science/article/abs/pii/S0163834320300645

EDITED spelling

 

[Jonathan Edwards]

[referring to an extended off-topic discussion, since moved]

At least the OP may get an idea of how the discussion goes here!

 

[Kitty]

It's not our job to diagnose, but we are responsible for helping them with management such as energy conservation strategies among other things.

The most important things for your colleagues to understand might be these:

1) They're not experts. There aren't any experts, which means much of what they were taught in their training could be wrong. When they're face to face with a patient, they need to understand they may know less than that person does.

2) There's no treatment. When they're face to face with a patient, they need to understand there's almost nothing they can offer beyond advice and signposting.

3) The only management tool is pacing. If a patient's symptoms get worse after activities on previous days, they're probably doing more than they're capable of and need to be supported to do less.

On that last point: it's hard for newly ill people to work out their capacity for physical, cognitive, emotional, and sensory activity, as it can change from day to day. Capacity is too contingent to be measured, but most people develop a sense of what they can do in a day or a week without making themselves feel terrible. They don't need to spend time filling in forms and questionnaires; their instinct is likely to be just as reliable and it doesn't waste nearly so much paper.

The object is to do as much as they can without triggering PEM, but they have to be allowed to work this out themselves. No one else can do it, and no one else should impose rules. One of the biggest challenges for people with ME/CFS is being expected to work to fixed schedules; the experience of many patients suggests that trying to adhere to them usually ends up making them a lot worse. That's not productive for anyone, and it's certainly not good management.

The problem is that there's no evidence that keeping within tolerated activity limits helps avoid worsened symptoms, just as there's no evidence keeping within tolerated birthday cake consumption helps avoid children being sick. You get a fair idea though.

I realise you know all of this already, @ElephantNerd!—but common sense, experience, and not allowing people to pretend they know things they don't, are the best we can offer to patients.

 

[Utsikt]

Adding to @Kitty excellent advice:

Don’t give the patients unrealistic hope. But also help them understand that ME/CFS might require some serious changes, at least short term and possibly long term. Holding onto doing X or Y might not be worth it.

Edit: as far as I know, the prognosis is really up in the air early. So acknowledge the uncertainty, but make them understand that adaptations will still be needed short term. Some new patients struggle to accept how sick they currently are. Others struggle to get those around them to accept how sick they are.

And they might need a HCP to tell their family that they need to adapt as well. Far too many are pushed beyond their limits by family that doesn’t understand.

And acknowledge their grief. There is so much loss, and it never stops. You lose things over and over and over again.

And be aware of caretaker burnout - do what you can to get them as much help as possible within what is available in their specific circumstances.

And make them aware that patients report that everything counts for PEM. It took me 2.5 years to understand that I couldn’t tolerate regular daylight because I didn’t even consider it to be a possible problem.

 

[DigitalDrifter]

We don't have terribly good evidence that ME/CFS is a physical disease yet.

All diseases are physical.

Beat me to it. Anybody claiming that ME is a misaligned chakra illness, or an Imbalance of Qi energy illness should have to prove it and the same thing applies to psychological explanations. I think we have very little evidence that proves ME is real but the FND enthusiasts claim they are not saying that the symptoms aren't real.

 

[Hutan]

@ElephantNerd - I just wanted to acknowledge your great response to our posts here. It is challenging to have ideas disputed, and says a lot about a person if they stick around to continue the conversation.

I agree with Kitty's post above, and Utsikt's post that follows it. As I mentioned, I think you could direct health professionals to the NICE ME/CFS Guideline. The CDC pages on ME/CFS are okay too. Neither are perfect but, importantly, they note that there is no evidence for graded exercise therapies or psychotherapy to correct false illness beliefs being useful for the treatment of ME/CFS. I think it would be fair to say that the advice in those sources has been welcomed and largely supported by ME/CFS organisations around the world.

If your article covered the key points in those two widely respected sources, it is likely to be helpful. You would be helping to stop people being harmed by enthusiastic health professionals trying to push people through to good health. If you quote those sources, the advice will seem credible, and it's not you having to decide what to advise your colleagues to do.

I don't know what country you are in, but it is possible that you have a good national ME/CFS organisation there. (Also very possible that you have a bad one.) If it is good, you could encourage your colleagues to put their ME/CFS clients in touch with the organisation - peer support is really helpful in learning how to cope with this illness.

 

[JemPD]

I also wanted to say that it's amazing, now i had chance to read more of your thread @ElephantNerd , that you are willing to use yr limited energy trying to advocate for PwME in your professional arena & I wish you the best luck with it.

I know it's a not a small thing for any person with ME/CFS to undertake writing a letter of this nature & i salute you for your contribution to better care for all of us, no matter what country you're in

 

[bobbler]

@ElephantNerd - I just wanted to acknowledge your great response to our posts here. It is challenging to have ideas disputed, and says a lot about a person if they stick around to continue the conversation.

I agree with Kitty's post above, and Utsikt's post that follows it. As I mentioned, I think you could direct health professionals to the NICE ME/CFS Guideline. The CDC pages on ME/CFS are okay too. Neither are perfect but, importantly, they note that there is no evidence for graded exercise therapies or psychotherapy to correct false illness beliefs. I think it would be fair to say that the advice in those sources has been welcomed and supported by ME/CFS organisations around the world.

If your article covered the key points in those two widely respected sources, it is likely to be helpful. You would be helping to stop people being harmed by enthusiastic health professionals trying to push people through to good health. If you quote those sources, the advice will seem credible, and it's not you having to decide what to advise your colleagues to do.

I don't know what country you are in, but it is possible that you have a good national ME/CFS organisation there. (Also very possible that you have a bad one.) If it is good, you could encourage your colleagues to put their ME/CFS clients in touch with the organisation - peer support is really helpful in learning how to cope with this illness.

I agree. And I'm also very intrigued by something hinted at in @ElephantNerd 's post

When I brought up concerns about her FND diagnosis, she said FND treatments are really helping her and that the understanding of FND has moved beyond the conversion disorder talk. She said thinking about her symptoms really does worsen them, and that the CBT to help her focus on other things really does improve her symptoms, BUT she also knows they are there and manages them without focusing on them, and that docs aren't telling her to push through at all.

I don't know what the FND advice being given out across the board is that is being talked about in said magazine article. It isn't really/never needed to be CBT anyway for the idea of getting people to not focus on what they are doing in order to engage the automatic processing system rather than controlled processing - the classic example here is often driving, where people eventually do much of that task 'automatically' once they've learned and been doing it for years, so if you suddenly had to explain to people what you were about to do with gear stick, mirror and putting down the pedal you make the task harder.

I thought that distinction had been used by cognitive psychology without labelling it 'CBT' for years in conditions where it applied that it might help, but done just by training patients to do things using it rather than necessarily doing it via CBT which seems a strange add-on delivery mechanism, but again I don't know the context.

So yes I think there is a problem with whatever area being clear on which 'bits' of these terms matter/are most relevant - and focusing on naming the mode of delivery over the actual treatment in these things. And I struggle to see why this mode is being used, but the bigger problem is suggesting that the type of CBT is the 'flavour/method of administration' as if 'CBT' as a generic entity is being the 'drug ' rather than the reverse, where it is surely the underlying 'model' being the 'therapy' and the CBT just being the mode of administration. To me the discussion would/should be if and then what might be of help and then deciding if any of the delivery methods available to do without causing problems, rather than choosing to inject something first and leaving it to the reader as to what to inject '...because it's effective'.

But then reading the slight sidetrack of conversation about PEM and whether it is some exertion-accountant kicking in too early/late or doing the hokey-cokey. It makes me think of the more broad issue/side problem that might underlie different therapies that I think would be interesting to cover as a broader topic/thread, but just perhaps isn't quite at the stage of elucidating out enough to do a good job in a response for.

contd in next post..

 

[bobbler]

And that is the idea that even CBT 'to cope with symptoms' has the issue that goes alongside it for ME/CFS that if symptoms are the signals by which a pwme knows they have overdone things then it is distorting the feedback system without a replacement for that information.

Which also makes me think of the Heins et al (2013) paper where did actually measure objective activity as well as perceived activity and they found that in those who thought they had done more than they had they thought their fatigue was lower. I'm not sure they used the term 'thought' though...

...But I did [use 'thought'] because (if you read the paper they divided people into fast, slow, non-responders to CBT) it sort of all comes down to a sewn-in ambiguity where the investigators seemed to believe this 'fatigue' as they measured it (CIS) was a different concept to what I suspect was for the participants an estimate along the lines of 'how exhausted do I feel' divided by 'how much work have I just done'; and the treatment they'd just been put through was aimed at changing their perceptions.

Without it being a measure with frames of reference what were they really asking? And what question/concept were people answering? Because its like the difference between triangulating fatigue with even something that was somewhat anchored to a somewhat objective function such as 'were you too exhausted to shower this week' vs the types of scale that ask people whether they 'feel sleepy a lot'.

Someone thinking they've done an 8hr day at work when they have only done 6hrs or finished a marathon when they are only half way round doesn't indicate you've made them less tired. And the investigators were apparently surprised to confirm in their study that fatigue increased with objective activity (that participants apparently weren't shown the readings for), because their beliefs were that these patients would feel better for exercising etc.

All of this of course really comes to a head as a conclusion in the longer term cumulative impact I suspect, because if I have to keep pushing my limits then the more permanent deterioration hits at say 6-12months as a reduction in threshold. And that is often well after these studies take their last measures, as well as often requires someone to be well enough to do said follow-up and not have dropped out (the filter of a treatment that the illest can't complete).

And that it is even more problematic as a technique depending on what is being used to encourage people to 'not notice/pay attention' so instils self-blame (or humiliation where the inference is other people either wouldn't do it or might judge) and/or creates a no-win for the patient - the prime example of which is the personality stuff (lazy/perfectionist), boom/bust inferences and sleep hygiene stuff saying people can't sleep because they rest too much based on no evidence.


I guess this all circles back to the issue of poor diagnosing, but also even after diagnosing the main illness a problem with not identifying the underlying cause/issue that in that instance actually is what someone could do with help with - rather than old models that are based on assumptions that have behind them grim stigma-labels, unevidenced ideas about personality, assumptions about exercise etc, or lack of insight become assumptions that too often mean the patient's voice is dismissed.

There is surely a tough task if patients reaching this allied profession do so with diagnoses and assumed causes that they aren't allowed to question. But still a worthwhile one!

But I do like the idea one day of having hallmarks that 'maybe it is ME/CFS vs ...' and there is probably a list of a few things not just FND here?

Please don't take this as any type of answer, and take the advice of those suggesting as @Hutan has above, which is a more sensible approach for the context I think - this is just a note that you've highlighted a whole new piece of work/thinking to go through that I'm trying to get my head around and is still at 'making a hash of it' stage

 

[Hutan]

We have moved off-topic posts to
Using Heart rate monitoring to help with pacing.

 

[Kitty]

@ElephantNerd - I just wanted to acknowledge your great response to our posts here. It is challenging to have ideas disputed, and says a lot about a person if they stick around to continue the conversation.

I also wanted to say that it's amazing, now i had chance to read more of your thread @ElephantNerd , that you are willing to use yr limited energy trying to advocate for PwME in your professional arena & I wish you the best luck with it.

Hear hear!

I wanted to add a quick clarification to what I said about getting an instinct for your activity limits, given that others have described repeatedly pushing themselves into PEM because their radar's not working.

At first sight it might look like two different opinions about the same thing, but I don't think it is.

People are right to say that, mid-activity, you often get no feedback about where your limit is or whether you've already breached it. It's a real problem.

What I meant was more general, for instance people getting to know what impact an activity like attending a medical appointment will have on them. For some it will mean not scheduling anything else the same day; for others it will mean days of pre-emptive resting followed by a recovery period during which they'll struggle to meet their basic needs.

So it's not the specific or immediate, it's getting a grasp of your overall severity level. What's usually possible if you manage it carefully, and what's out of the question. How often you can do it, for how long.

It isn't a skill that needs to be taught by a therapist, either. Someone recovering from knee surgery quickly learns that some activities leave them shattered and sore, and if they try to do them again the next day they'll really regret it. This is no different.