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

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.

 

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

 

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.

 

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.

 

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!

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

 

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.

 

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.

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.

 

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.

 

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.

 

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.

 

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:

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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)

 

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.

 

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.