Building an evidence base for management of severe ME (including sleep management)

[duncan]

Medical axioms have a bad history with pwME; they not only may not apply, they can make us worse. You might as well start with asking about our mood when we are crashing, or before we crash, or after. Not only is mood irrelevant as a causative agent, those who query it have mischaracterized us and our disease for decades. We have been victimized by dogma.

Moreover, not sure even patients will answer the questions correctly. If correlations are involved, we just might not have enough of the requisite insight. This is not a slight against patients. What if diet matters, and you don't know that? As for sleep, it's so hard to come by, I long ago stopped looking at it as restorative; i look at it more today as a hard-to-get-to port in the storm, a shaky staccato respite from feeling terrible. I think it's downstream, but I don't care anymore.

I'd be real careful about asking the right questions, and not embedding what might prove to be dangerous assumptions.

That aside, this seems to be a good idea. You have to start at the beginning, and we seem to have missed that step for the last four decades. Common sense is good, and for me, a refreshing change of pace.

 

[Inara]

How about a long term study using actometers that simply collects data on activity levels and sleep patterns in severe and very severe patients, alongside an app that has easy to fill in symptoms each day. In other words, no intervention, simply measuring and looking for patterns.

I think the NIH study "Daily activity patterns and heart rate variability in ME/CFS" is doing something like that?

 

[Barry]

I am not looking for behaviour modification. I am looking for evidence for one or other sort of advice being sound. Why would you be uneasy with such a trial? Don't we need to know what the answer is?

I fully agree, that's fine. In truth PACE would have been fine if it had been sound science, and had honestly reported objective results; everyone would have then known long ago that CBT and GET achieved nothing, and for science to look elsewhere. The crucial thing is for results to be honestly arrived at and reported on, even if (especially if) null.

ETA: The point of clinical trials is to arrive at truths, and provided they do that then testing an "uncomfortable" hypothesis is still fine - truth trumps all.

 

[Amw66]

I sense theory creeping in already! But still interesting thoughts.

I think I am looking for recommendations that can be described succinctly and do not require any interpretation - such as what constitutes available energy. And I am not suggesting that we should be thinking that routine for routine's sake should be good or bad.

So I think a plan that standardises wake and sleep times could be compared with a plan that does not - with no hang ups about why. And the outcome measure would simply be how active the person was over a period.

Track it with batch calibrated fitbit type devices and you may get an insight on usefulness re each approach from HR and sleep data. How you feel you sleep and how you actually sleep can be entirely different things.

 

[Barry]

So you basically are looking for behavioral modification for people who sleep too much or sleep at the wrong time?

No, I don't see @Jonathan Edwards is saying that at all! Suggesting running a trial to assess the truth about a hypothesis is not the same as saying you necessarily believe in that hypothesis. It is simply wanting to arrive at the truth, with good evidence for it. You have to follow the evidence, wherever it leads, if solutions are to be found ... including political ones!

My concern about imposing a pattern of activity/rest/sleep etc. of any sort on someone who is already very severely affected could be in danger of making their health much worse long term, and therefore as unethical as imposing an exercise program on them.

That, of course, would be an important ethical consideration.

 

[Annamaria]

I suggest collating evidence on 24 hour cortisol levels in ME which are often low, borderline or skewed (may correlate with skewed sleep patterns eg getting to sleep late and waking late). Also thyroid function (not just the standard lab figures, but clinical observations.) HPA axis function also seems to be out of kilter in many patients.

 

[Barry]

I clearly remember someone recently saying that sleep standardisation was a huge help - so it seems to help some people. But if course a controlled experiment is needed to see if that is borne out.

I think my wife finds finds that helpful to a degree, but not in any regimented way; she is mild/moderate - not sure if that is relevant. As far as possible my wife tries to not sleep during the day, else she finds it harder to sleep at night; so she strives for standardisation in that sense, and if life is not too demanding then can achieve it. But at the present we have our daughter and grandchildren with us, which is wonderful but also demanding, even though our daughter is immensely helpful and understanding. So my wife cannot currently manage without flaking out at times during the day, and has to accept that what she normally strives for has to give way to what is unavoidable.

Please note this is purely for information, and I'm not suggesting you are advocating regimented sleep patterns, because I know you would not advocate anything unless there were good evidence for its benefits.

Abnormal sleep is a consequence, not a cause, of the illness.

Agreed. But in my wife's case that just means her sleep management is effectively a form of symptom management, and I think would come under the broader interpretation of pacing; it's all part of how she paces her life overall.

 

[Willow]

Medical axioms have a bad history with pwME; they not only may not apply, they can make us worse. You might as well start with asking about our mood when we are crashing, or before we crash, or after. Not only is mood irrelevant as a causative agent, those who query it have mischaracterized us and our disease for decades. We have been victimized by dogma.

Moreover, not sure even patients will answer the questions correctly. If correlations are involved, we just might not have enough of the requisite insight. This is not a slight against patients. What if diet matters, and you don't know that? As for sleep, it's so hard to come by, I long ago stopped looking at it as restorative; i look at it more today as a hard-to-get-to port in the storm, a shaky staccato respite from feeling terrible. I think it's downstream, but I don't care anymore.

I'd be real careful about asking the right questions, and not embedding what might prove to be dangerous assumptions.

That aside, this seems to be a good idea. You have to start at the beginning, and we seem to have missed that step for the last four decades. Common sense is good, and for me, a refreshing change of pace.

Yes, Yes Yes. Thank you @duncan for these words of wisdom. So spot on and the basis of many of our problems with the medical profession.

Thank you @Jonathan Edwards for starting this valuable thread and for listening to the truth of our experiences. It is the only way to start again. Such good discussion from all those contributing.

 

[Barry]

'Professional judgment' may be good common sense but historically it has mostly been bullshit.

An awful lot of medical professionals, in their 'professional judgement', still believe ME is not a real illness, so is indeed very often unevidenced bullshit.

 

[arewenearlythereyet]

I have very little experience of the severe end...only what others have discussed here. here are a few things that occur mainly from comments from others:

- sleep..my experience is that this probably is a non starter as others have mentioned but proving what works best would probably be useful. (quality of sleep is so variable especially deep sleep). I think sleep needs a broader study including mild and moderate and severe and very severe and comparing how they differ and how this changes during PEM. I suspect that level of activity may have a direct link to quality of sleep outside of PEM. I think we need something better than BPS garbage on one hand or patient testimonials on the other. If that shows ...just get what you can ..I think that’s useful?

- hydration including electrolytes ? Lots of talk about magnesium, potassium, blood volume etc. is this real? Is it useful?

- eating little and often as opposed to large meals ? Obviously food sensitivities permitting...is this really useful?

- heart rate pacing setting limits ...is there advice for the severe that could help identify a tailored activity envelope using heart rate zone limits? Or is this just totally impractical

- limited exposure to light and sound - is there practical advice here ..is there any other things that can be limited for the severe?

- pain relief what meds, are they useful or not? What ones work best?

- what routine testing is required...hormones, bloods, nutrients?


As I said I’m a little inexperienced in this area but I think we do need some proper studies...even if they show that conventional thinking can’t be applied.

 

[Samuel]

i believe our community is not always on the same page about the disease, and this is best illustrated by miscommunication over severity levels.

here is an example:

This might be true but it needs testing before any advice is given. Help with cooking is pretty much bound to be helpful at the time but the question is whether it makes a difference to long term progress. If not then there is no point putting it in the advice literature or NICE guidelines.

for any definition of severe that i use, it does not make sense to test this.

===

apologies for theory-ladenness in the following.

1. when you are bedridden, you can't cook or bring food to yourself. some theoreticians would say this is logically implied.

[however, some theoreticians will posit that you can have a large pile of crackers next to your bed [enough sufficient for the rest of your life], or that you can go shopping, use a blender, and fill your feeding tube yourself, even if you cannot lift your arms.]

2. if you do not eat, you die. however, some theoreticians claim that you do not need to eat.

3. dying makes a difference to long term progress. some theoreticians would say that this is logically implied. however, some theoreticians at NICE might dispute this.

please do not test these propositions.


p.s. http://thekafkapandemic.blogspot.com/2013/01/an-objective-severity-scale-for.html .

ETA: i hope you will read this: http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html

 

[Barry]

I'm not bedbound, and despite having an ME diagnosis am increasingly unsure if I have ME at all, but my experience is that going to bed and raise within a fixed time window [edit:] seems to help me.

That would fit with my wife's experience, who was diagnosed with ME 12 years or so ago. As I've said a few posts back, I see it as a form of symptom management, and maybe that is like all sorts of other illnesses, the more severe the symptoms the harder they are going to be to manage. Up to a certain point then maybe it is beneficial to attempt a degree of sleep management, but beyond that point (of symptom severity) then maybe it becomes counter productive. I think this thread is itself showing that there are unanswered questions that need answering, and the answers may well be different but valid for different people. The pacing element comes in, for my wife, in that it is something she strives for, but bows to the inevitable when she has to. See my post #67.

 

[Barry]

I've even wondered whether putting people in an induced coma for a while might help, but that's probably a bit extreme!

I used to be a big fan of the James Herriot vet stories, and I seem to remember him doing this with one of his patients, when everything else he tried had failed, and the animal looked like it was on its way out. I think it put it out for 48 hours or something, and it made a 'miraculous' recovery.

 

[Barry]

As to goals, I'm a bit allergic to the idea of goals

I think the key is that @Theresa said achievable goals.

ETA: But of course it depends very much on who is presuming to set the goals. I was thinking when I wrote this of people setting their own realistic goals, rather than others 'prescribing' them.

 

[Alvin]

I am unable to read the thread but from the first post here are my thoughts

Nothing has been written except the PACE pusher BS because no one has taken it upon themselves to do so.

We have very little evidence since no real research on this has been done or collated. So all we have is anecdotal evidence from patients and physicians.
It would be nice to do such research but we would need years, money, patients, "placebo" controls and informed consent that some ideas being tested will cause permanent worsening. Not very ethical to demand of patients.

My suggestion is to collate our anecdotal findings, talk to physicians who specialize in ME patients and come up with a consensus document. Acknowledging its very real limitations and publishing it.

 

[Barry]

For people with hypothyroidism as well as ME, it would be good to know if being allowed to take a thyroxine dose that pushes FT4 a touch above the normally accepted high limit is worth considering as a matter of course. My wife is on a slightly higher dose these days, which does just that, but we are pretty sure it has helped her to a degree (but n=1 I fully appreciate); not the magic bullet we briefly hoped for though.

 

[wigglethemouse]

Alright, how about this book to get an idea of SevereME. Anyone have any opinions on it?

Severe ME : Notes for Carers Kindle Edition
by Greg Crowhurst (Editor)

This illustrated guide with contributions from carers and those who are ill, from around the world, is packed full of practical tips, insights and self-reflective exercises designed to raise awareness of how to care for someone with Severe/Very Severe ME.

Greg Crowhurst has qualifications in Nursing, Staff Training, Experiential Learning, Counselling, Web Design and Life Coaching plus an MA in Personal, Moral and Spiritual Development. He has spent over two decades caring for his wife who has Very Severe ME. Greg was one of three finalists in the prestigious BJN Nurse of the Year Award 2015.

For more details and videos please see the book's webpage : http://stonebird.co.uk/Notes/index.html

 

[Milo]

My suggestion is to collate our anecdotal findings, talk to physicians who specialize in ME patients and come up with a consensus document.

Another consensus document based on opinion (which we all know can be biased).... eeeeerkkkk.

I vote for actual science. We deserve real science, not self-management guidelines. If we do not have evidence, then let science decide. I really wish though that the priorities in research are towards cause and treatments and not centered on symptom management.

 

[Alvin]

Another consensus document based on opinion (which we all know can be biased).... eeeeerkkkk.

I vote for actual science. We deserve real science, not self-management guidelines. If we do not have evidence, then let science decide. I really wish though that the priorities in research are towards cause and treatments and not centered on symptom management.

If you can scrounge together the money and get someone to run it then get statistically significant numbers of patients enrolled (each aspect will need dozens or more) and wait years for results then i'm all for it.

 

[Wonko]

I would guess at comparing plans in place over a period of say six months.

It is not that anyone has to follow the sleep routine, if it is problematic. It is simply suggesting that it is proposed as a plan to try - with no value judgment attached.

There is always a value judgement attached. It may not be stated, recorded, or acted upon but a patient who refuses, for whatever reason, to follow 'medical' or even 'well intended' advice is always held in less regard than one who does follow the 'advice'.

For myself I can't answer the sleep thing, in general trying to follow other people's ideas, society's idea, of when I should sleep, for how long etc. makes me more ill. It means I do not get the sleep or rest I need.

So advice to improve sleep hygiene would not be helpful to me, nor I suspect to anyone, anywhere, ever. Surely by now everyone, literally everyone, already knows about sleep hygiene.

So is advice on sleep hygiene helpful, unnecessary or harmful IMO? Annoying, patronising, trivialising, unnecessary, and potentially harmful in the short term.