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

Up to page 5 already and I have only read the first post in this thread a few hours ago. I want to post but will have to read everyone's post afterwards otherwise I am not going to be capable of saying anything.

I don't know if I am in sync with what the thread is about but..my thoughts on this are that a patient who presents with severe ME should (naturally) have all other illness ruled out and a diagnosis of ME made. Then the patient needs to be told to rest indefinitely.

Doctor needs to assign patient with a social worker for practical help only to organise help with, housework, meals if patient is on their own, help with getting income support/disability benefits immediately, help with filling out forms. There should be no meddling with medical matters or making "patient looking better" comments in notes.

Just to begin with.
 
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.
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Being allowed to rest. There is not enough rest for the severe types of ME and that is why it takes years to get to moderate. It's a long slow catch up because you are a long way in minus.

I'm still thinking about what else helped me.
 
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Would an app along the lines of what was discussed by Sadie Whittaker fit the bill? Discussed here:

https://www.s4me.info/threads/video...r-from-solve-me-cfs-initiative-may-2019.9425/

So, basically collecting 'big data' on what patients actually are doing - without anyone needing to change their behaviour (unless they happen to be experimenting anyway) - and see if anything pops out? And data could be entered by carers on behalf of severely ill.

I suspect it'll be a difficult one to tease out. For example there seem to be people who need to sleep a great deal and others who can't get enough sleep. It's conceivable that the first group would do better without a routine and sleep whenever they feel like it, whereas the second group may do better with a routine. It would definitely be good to find out. Though I'm scratching my head for a simple way to account for my personal experience in an app - and that's only for 1 person!

Personal experience: I fluctuate between moderate and severe (so not applicable to the very severe).

At base line I never get quite enough sleep but sleep hygiene and routine help maximise the sleep I do get. Daylight saving changes always knock me back badly. I don't know whether that's due to the change in sleeping routine or to eating at different times, or to something else altogether, but changing my routines does make me worse.

During PEM I can go up to 2 days and 2 nights at a time without any sleep at all, sleep hygiene or no sleep hygiene, absolutely nothing helps until I've rested myself enough to be able to sleep again (try explaining that to a healthy person). When starting to sleep again, initially the quality of sleep is so poor that my fitbit doesn't even register it as sleep. That would be a problem if collecting data for a study straight from such devices.

I never sleep during the day, not because I don't want to but because I can't.
 
Regarding sleep, I had severe insomnia getting only 4 hours sleep and a lot of nights no sleep at all. I was also not able to tolerable medication because the side effects made me feel worse. So I went through those years with no help for sleep because I couldn't bear any side effects that sleeping tablets might give me. I never tried any sleeping tablets in those years.

I should have been sent to a sleep clinic to see what was happening. It's difficult getting how serious symptoms are across to GP's especially when you have so many different severe symptoms.

Now at moderate level I only get insomnia when I have a severe bout of PEM.
 
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.
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Yes, I was the same. I couldn't bear to be touched. I thought I was going to die many times and I didn't call an ambulance because I was too ill and couldn't bear them to talk to me or touch or give me strong medication. I was even unable to think because my head/brain was so sore and felt bruised.

I think this is very severe, not severe and those on tube feeding very very severe.
 
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I agree there is a lot of merit in this way forward. We constantly hear/read stories of inpatients having eyemasks/earplugs removed due to a lack of understanding; if there were evidence that these were beneficial(wwhich as patients we know they are) this practice could be stopped.

I've often thought that a large scale questionnaire is needed, with enough detail to generate hopefully meaningful data. I know it wouldn't be a controlled situation but a good survey of as many of the patient population as possible could tell an awful lot, especially what are the similarities and what are the differences between patients.

I know a long questionnaire would be a big undertaking for patients and to have significant enough responses would take a lot of processing but we need practical information about all of us who suffer from this.

Questions about:

Length of illness and fluctuations therein.
Sleep quality - have any routines been applied.
Responses to medications.
Necessary modifications to ensure comfort - earplugs/eyemasks.
Time spent lying down, sitting, standing etc.

There will be loads more to consider, including questions re treatments although these have been covered by patient associations before.

One of the problems with studies, especially in the moderate/severe/very severe end is that change takes such a long time. Negative change does occur quite quickly in response t o interventions but positive change can take 6 months-1 year or more (in my case) so can be very hard to assess if it was due to a particular intervention or just the natural course of the illness.

I have a lot of thoughts buzzing around my head about this but they're not all coherent so I'm hoping some of them will settle down and allow themselves to be caught!
 
Wonko said:
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'.
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I think you are missing my point. I am suggesting testing plans such as sleep hygiene in a trial of the sort Keith Geraghty suggested - where the people giving the advice have no opinions about the value of the plan. Instead of health care professionals giving it you can hire some trial technicians to give the advice. As should be the case, the trial information should say nothing about one plan being good for this or another for that. It is just a suggestion for people to try.

The plan only becomes medical advice once the trial is finished and it has been found objectively that plan C, rather than plan G, is associated with better progress. And the advice is simply that 'we have found in a controlled trial that this seems to help people keep well'.
 
How would you measure just not getting worse? Management advice that patients give each other usually seems to focus on that (eye masks, limiting sensory stimuli, frequent rest breaks, etc.).

I definitely like the idea of actually studying some of the advice we're getting (when I first got sick, a lot of ME/CFS clinicians would give advice like "plan your day and then just do 50%" which was not scientific or practical). However, we're such a heterogeneous population where what works for one patient doesn't work for another. How do you study that? We don't know what sort of subgroups there are. How do we find them? Was RA as heterogeneous? How did you deal with that?
 
Here is what I can say based solely on my own experience. I progressed to severe, bed-bound (other than bathroom), to the point where lying in bed felt like too much exertion for my body, PEM was constant and just further exacerbated by literally any effort. Luckily I improved after maybe 4 months of that. No theory.

The first thing is that severe ME is always liable to obliterate any sort of plan you put in place. I was just along for the ride, trying to hang in there.

Okay, here are my suggestions in general terms:

-Expectations: Patient should never feel any sort of obligation to be useful/contribute in any way, or to push him or herself more than what is 'comfortable'. As long as this isn't taken to some absurd extreme.

-Food that the patient subjectively tolerates should always be as easily available as possible. The patient should not be exerting him or herself in the task of making meals.

-Sleep : Okay, I have a big worry about hypnotics in severe patients - sleep apnea. I don't know if this is something that other patients experience, but when I was very ill (and never at any other time in my life), I would sometimes wake up gasping for air. It seemed unwise to take any drug that would make it harder to wake up in such a situation. I don't know if sleep apnea has been studied at all in severe patients; if not, I think rather strong caution is warranted. Other than that, I think anything that can improve sleep should be on the table to be studied.

-Bathroom: whatever makes it as easy as possible...

-'Environment': should not be overstimulating. Light and sound should be reduced to where it does not bother the patient.

-Activities: anything that can be enjoyed should be easily available. I had my guitar in my room. Computer access would be important for a lot of people, although that was not something I could tolerate. Audiobooks, whatever.

-Interaction with family / friends: as much as can be tolerated. But only as much.
 
Just jumped into this fast developing interesting thread, so not up to date on comments, but see that sleep is an big issue, and rightly so. As I from personal and general experiences find it, the problem of non-restorative sleep is major. If that is part of a “defect” sleep-system or a result of constantly overdoing, which does not mean anything at all, just upholding life, well I can’t answer that. Maybe a combination of the two?


But sleep-studies would be good. Maybe hard to do and expensive, but should be done.

Personal experience, but maybe some general value;

When it comes to sleep hygiene, I personally as a main rule always gone to bed at about the same time, gone up about the same time, though never ever being ready for that. I am much worse off waking up and when going crushed to bed the night before. You could have a feeling of sleep as not conscious, but the restorative-effect is like zero, even like breaking down event further. So getting up does only mean getting awake and moving on to another place to lie down. Then after 4-5 hours of waken rest, probably a tiny bit better. So as an simple observation from this, it is almost as when body go to sleep, the system of restoration goes completely off. When in “motion” (awake) restoration may function, just a tiny bit? Very seldom slept during day, but having short naps randomly.
 
Ravn said:
So, basically collecting 'big data' on what patients actually are doing - without anyone needing to change their behaviour (unless they happen to be experimenting anyway) - and see if anything pops out? And data could be entered by carers on behalf of severely ill.
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Yes, capturing factual data from a large number of people, as untainted as possible by beliefs (likely sincerely held) about relationships between that data. Then let data analysis tease out the stats of what correlations there might really be. Maybe even some clues to causal relationships.
 
Peter said:
So as an simple observation from this, it is almost as when body go to sleep, the system of restoration goes completely off.
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I think the immune system works very hard during sleep and the waste products are not removed enough.
When I forget to take my immunemodulator I have a huge hangover the next morning. One of the effects of the immunemodulator is decrease of superoxide and hydrogenperoxide.
 
SallyC said:
I have a lot of thoughts buzzing around my head about this
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So do I but as I am planning to have a longer forum break, I'll leave some preliminary thoughts here.

Apologies if some thoughts might be off topic. I never experienced severe phases or prolonged PEM lasting longer than several weeks. I just thought that perhaps there are some general considerations that could be drawn from my experience (now in my 21st year of being ill) with regard to conceiving how to build the proposed evidence base.
Also apologies in case I'm being redundant, could not read all posts.

Jonathan Edwards said:
I was just interested in what forum members and maybe eloquent people like JTB might give as starter suggestions.
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That sounds good to me.

Maybe investigating seemingly simple issues like sleep routines could be misunderstood as trivializing people‘s illness. Again, I think this could be avoided by defining which signs/ symptoms would be sufficient to stop the experiment.

From my own experiments long time ago when I was still mild: Should I‘ve stopped my 'how long can I do activities-in-an-upright-position-experiments' when I repeatedly stumbled and nearly fell or after I actually fell or after I repeatedly fell? I never injured myself seriously when I fell, but this was mere luck.

This question has to be adjusted for severe patients, of course.

So I think to avoid doing harm, questions actually needed to imply an assumption: That any experiment on severe pwME has the potential to do serious harm.
 
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In general, I think to not misunderstand Jonathan‘s idea it‘s important to be aware that he is interested to find out what helps and that he doesn‘t make assumptions. Some of us who are living decades with certain illness patterns might feel offended when somebody wants to investigate such simple issues, because we might think they imply the assumption that we haven‘t tried already to adhere to plans and schedules and learned from our experience. But if I understood properly, this is exactly what Jonathan wants to have access to: Our experience, to conceive how to scientifically assess evidence.

However, to me e.g.the expression 'people prefer to lie down' (made in another thread I think) seems to be prone to misunderstanding. When I experimented what happens when I don‘t sit or lie down when I feel I should, this was not merely unpleasent but dangerous.

edited for clarity.
 
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strategist said:
There urgently need to be some sort of specialists that can treat rapidly deteriorating patients, those in need of hospital care for whatever reason. Contact with healthcare systems at the moment is so bad that it can really harm patients. If there existed such specialists we would also learn more about severe ME.

PS: something that can prevent Robert Courtney scenarios, and cases like the one where a man with ME starved to death because the GP thought he could care for himself.
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This is what we had in East Anglia until 2006/2007 and this is what was lost......
This is why we are continuing the fight for re reinstatement of the service model developed by the Late Dr Terry Mitchell to help the severely affected.
I believe Dr Paul Worthley also has a similar appraoch and maybe Jo you could speak with him?
 
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