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

wigglethemouse said:
Have you thought of contacting Dr. Lucinda Bateman? She is chairing a group writing a clinical consensus document which will be written and signed off on by the US ME/CFS clinicians coalition. While you probably cannot use something that has not yet been published, she might know of some existing literature that could be useful.
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The trouble is that I am pretty sure that there isn't any evidence. And I am wary of clinical consensus documents. That term implies that in the absence of evidence doctors have to find a common ground based on their favourite prejudices. I am more interested in patients' experience as starting points.
 
Jonathan Edwards said:
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.
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I'm too slow for this thread, so repost and amend what I added when you already had answerd my post:

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.

When I'm worse I have to lie down again shortly after I got out of bed, though, and sleep a lot over the day. Even on 'normal' days I regularly have several naps over the day, lasting between 10 and 45 minutes. But if I go to bed within my set evening time window, I'm usually able to sleep neverthelss. That's one reason I am skeptical that I have ME -- I very rarely experience insomnia (and when I can't sleep I usually can attribute that to certain events, e.g. exciting things happening on S4ME ;-) )

However, I'm worried, as others have written, that experimenting with sleep deprivation could harm people. So I think it would be necessary to first determine which signs/ measures of deterioation would be sufficient to stop the experiment.

Thank you all for this important discussion--going to bed now (it's already beyond my time windwow this evening, but sometimes that's allowed). :asleep:
 
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In terms of sleep, I haven’t read all the posts, so sorry if what I’m saying is not relevant. but in my view sleep is directly linked to the illness. My sleep was fine until I became unwell with M.E. When my m.e becomes worse due to relapse, then, as a direct consequence; my sleep is often worse. In the same way that a lot of conditions relate to the brain do cause insomnia (or for example how sleeping sickness causes a reversal of sleep-day patterns which is very similar to very severe M.E). I have never found any sleep hygiene rules or sleep patterns or anything of any help, infact it’s been very stressful and made my M.E worse. I now sleep as and when I can, and mostly get 8 hours sleep a night.

What I think severe M.E patients need is care and kindness from medical professionals and Carers, doctors and nurses who visit us at home, an understanding of the severe sensitivity to light noise and any other arousal, help with benefits and in general making us as comfortable and happy as possible. :) I wish I could have all this. At the moment I don’t have any of these..
 
I do take your point, @Jonathan Edwards, that if sleep hygiene is currently in the NICE guidelines, it needs to be tested in a properly set up trial to see whether it is helpful, harmful or neutral.

I don't know how that could be done in time to influence the guidelines, as surely it would need to go through all the process of protocols, ethical approval, funding, finding patients etc. And of course it would be potentially compromised by people taking or not taking different sleep medications.

What time scale would you envisage patients trying it for?
 
Jonathan Edwards said:
I am also interested in what people have found to work. In particular I would be interested to know what the supportive care was during a period when someone was fortunate enough to rise up out of a severe phase and function at a moderate level. I guess that the responses to this might be endless but I am particularly interested in plans for daily routines that can fairly easily be defined as potential alternative ingredients. An obvious one would be regulating sleep and wake times and so on.
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When I was severe I wanted to be left alone. No advise. Let me do it my way. It was hard enough to stay alive. No room for rules. In dutch: Niet aan mijn kop zeuren.
 
Trish said:
I don't know how that could be done in time to influence the guidelines, as surely it would need to go through all the process of protocols, ethical approval, funding, finding patients etc. And of course it would be potentially compromised by people taking or not taking different sleep medications.

What time scale would you envisage patients trying it for?
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Yes, I see no prospect of any of this affecting the current guideline decisions. It is for the future. In part it is something I might want to raise with the committee as an alternative to the sort of theory laden trails we have seen to date - as an illustration of something constructive to take forward later.

Taking medications needn't compromise anything. The idea is to study advice. It is a bit like the principle of 'intention to treat' analysis. It does not matter if they never get the treatment as long as they are in the randomised group where that was the intention.

I was thinking of trying for six months on the basis that what we are really interested in is the long term outcome. My impression is that people can adhere to plans for a month or so through commitment and maybe a bit longer. The real long term impact does not necessarily show itself until later. But two months might be enough. Again, it is possible to build options for shifting plan into the design as long as one respects the intention to treat principle.
 
lansbergen said:
When I was severe I wanted to be left alone. No advise. Let me do it my way. It was hard enough to stay alive. No room for rules. In dutch: Niet aan mijn kop zeuren.
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I understand that sentiment. But, in a rather different context, my wife when she was ill wanted to be left alone. If she had been, she would have died. She was already down below six stone. She had a different sort of illness but good advice is not always welcome. Daily postural drainage for kids with cystic fibrosis kept them alive but I doubt they wanted to do it. I am not suggesting any theory driven imposition of anything but we need to have the evidence for what keeps people as well as they can be long term.
 
Milo said:
The commonalities would be that symptom management or palliative care would rank high when there is not much that can be done for their illness. What are the most disturbing symptoms and how to deal with them?

Then assistance with activities of daily living. Bathing, feeding, and bathroom related needs.

Socio-economic needs also rank high, so the patient is not constantly worried about whether they will get cut-off from benefits or forced back to work.
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Yep
 
Haven't read all the comments but if it's simple practical advice that is being sought for consideration -- to get off the sleep issues what about hydration? If people are severe they may not be hydrating well/enough. I don't know what is optimal for this -- I can't drink the recommended amount for a normal healthy person.
 
A problem with trying to take evidence from people who have improved from one level of ME to a higher level (very severe to severe, or severe to moderate) is that many patients telling their stories attribute their improvement to whatever new thing they were trying at around the time they noticed an improvement, whether it was a dietary change, or meditation or yoga or homeopathy or sleep hygiene or resting more or increasing activity.

There's no way of knowing whether these factors were coincidence or that they had only managed to make those changes because they were improving naturally anyway, not vice versa. There are so many factors of daily living that teasing out whether any of them is relevant seems impossible. I'm just trying to imagine the length and detail of questionnaire you would need!

Which, of course, is why it has to come down to clinical trials. But the question is, what management strategies are worth trying in such trials. And how many severely affected patients are in a position to be able to implement, or even try to implement different management strategies when many don't have access to the support systems that would enable them to participate.

For example, one I've seen mentioned several times on forums is 'aggressive rest therapy' where, as I understand it, all you do is remove all stimuli, rest, sleep, eat and go to the loo. In theory I'd give that a go, but in practice it's totally impractical in my life situation, and I'd go bonkers with boredom.

I've even wondered whether putting people in an induced coma for a while might help, but that's probably a bit extreme!
 
An aspect that maybe should also be considered, is the supportive care needed during hospital visits (emergency or routine), for conditions other than ME. I'm sure for a lot of pwME it can make a bad experience far worse.

ETA: I see @Trish (and probably others) got in well before me. But it's important enough for me to let this comment remain.
 
Trish said:
There's no way of knowing whether these factors were coincidence or that they had only managed to make those changes because they were improving naturally anyway, not vice versa.
Which, of course, is why it has to come down to clinical trials.
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Indeed.

Trish said:
But the question is, what management strategies are worth trying in such trials. And how many severely affected patients are in a position to be able to implement, or even try to implement different management strategies when many don't have access to the support systems that would enable them to participate.
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Yes, that is the question. My guess is that you start with things already advised or popular with patients. You cannot test too many things at once so I suspect that finding a core set of things to start with would not be too hard. If a trial is set up then by definition you provide resources for the trial to make it possible for implementation to be realistic. Maybe attention should be paid to air temperature and humidity - maybe not. But it should not be too hard to have a plan for that. And again, what matters is the plan, the advice, and whether in practice it makes a difference, on an intention basis in real life.

Maybe the nurses involved in the FINE trial could help out. They had to go and look after severe people and had no real idea what they were supposed to be doing to start with. They must have had a steep learning curve in terms of what made sense.
 
I am going to try pottering off to bed, with the window slightly ajar. I have an unreasonable belief that this will get me a good nights sleep. On the other hand I have been doing it for forty years and all that has happened is that I have got older and cannot sleep on my right side because of a sore shoulder.

But then if I had kept the window shut I doubt I would have been any younger.

Maybe its all about proving that common sense does work sometimes.
 
I think having achievable goals for each day no matter how small is helpful and also somethi g positive to aim for in the longer term if health improves, and most importantly feeling safe, maybe having some kind of authority with ME expertise that sufferers can approach to intervene if thry are being mistreated by family or doctors etc.
 
Trish said:
I've even wondered whether putting people in an induced coma for a while might help, but that's probably a bit extreme!
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lansbergen said:
Many times I wished that.
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I’ve fantasized about that sometimes during my worst crashes. Resting completely without the horror of PEM or the alternative, being bored even more out of my mind than I already am. It’s probably not without drawbacks, though.

Aggressive rest is something that could be tested, probably. Pacing (doing as much as possible within energy envelope, structuring activities and rest) vs no intervention vs aggressive resting, maybe.
 
Theresa said:
I think having achievable goals for each day no matter how small is helpful and also somethi g positive to aim for in the longer term if health improves, and most importantly feeling safe, maybe having some kind of authority with ME expertise that sufferers can approach to intervene if thry are being mistreated by family or doctors etc.
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That sounds right. Just knowing that people have tried a plan before and found it helpful, and that a simple sensible study has confirmed that would seem to me to begin to provide the sort of trust-based grounding that supportive care needs.
 
Theresa said:
I think having achievable goals for each day no matter how small is helpful and also somethi g positive to aim for in the longer term if health improves, and most importantly feeling safe, maybe having some kind of authority with ME expertise that sufferers can approach to intervene if thry are being mistreated by family or doctors etc.
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Hi, @Theresa, welcome to the forum.
I think you make a very good point about feeling safe, and having access to supportive and expert intervention if being mistreated is really important. It's so sad that this should even need to be said.

As to goals, I'm a bit allergic to the idea of goals because it can be misconstrued as extra things that involve increasing activity. Unless of course it's a goal to do less - my eternal goal that I never achieve.
 
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