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

As well as looking at what factors might have been involved in people's health improving up the severity scale, it is equally important, I think, to study what factors might be involved in descending down the scale.

For example, has anyone's ME got significantly worse while keeping their activity well below their 'energy envelope' and avoiding PEM altogether? Is there such a thing as resting too much?

All the anecdotal stories I've read about people rapidly descending from mild/moderate to severe/very severe seem to follow on an attempt or a series of attempts to stretch the envelope significantly and the consequent bad bout of PEM turning out to be the beginning of a permanent or very long term relapse.
 
Wonko said:
...and 400BPM? a typo surely, I'm surprised that these things even have the capability to go up that far.
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Eeek, yes it should be 400 minutes!! Thanks for pointing out the error, will amend.

With regard to food it can be a sensitivity to a particular food, eg fermented foods, or those with high histamines. Some people report significant responses on the HRM Facebook group.
 
Trish said:
As well as looking at what factors might have been involved in people's health improving up the severity scale, it is equally important, I think, to study what factors might be involved in descending down the scale.

For example, has anyone's ME got significantly worse while keeping their activity well below their 'energy envelope' and avoiding PEM altogether? Is there such a thing as resting too much?

All the anecdotal stories I've read about people rapidly descending from mild/moderate to severe/very severe seem to follow on an attempt or a series of attempts to stretch the envelope significantly and the consequent bad bout of PEM turning out to be the beginning of a permanent or very long term relapse.
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Descent is not always due to stretching the envelope; for instance, a necessary life saving surgery can precipitate a descent. We have this in our family; after 7 GI haemorrhages, a surgery was required to remove the problem, and that brought on a descent to the worst circle of hell, from which there has been no ascent.

This has led me to question what in heaven's is this nightmare illness that after surgery, when a person is in hospital getting transfusions, returns home and is bed bound, the illness just slides down into the gulag.
 
@Trish
The worsening of my M.E. has been due to both a gradual decline and more significant deteriorations as a result of individual relapses from which I haven't recovered to my previous level of function. Very frustrating.

I don't feel I have any more energy since using BB. But I do think that as a result of the BB the energy that I do have is not being swallowed up with the tachycardia and jitters. So I have got back some function and improved QOL. Not back to where I was though before the OI worsened 2 years ago.

Someone mentioned "aggressive rest" and I have heard that some find it helpful to stabilise, then to bring about improvement. It is a very strict protocol. You need a lot of support. Plus a lot of discipline, only undertaking activity in maximum of 2 minute slots.....
 
Trish said:
Thanks @Perrier, you're right, I should have included major stressors such as traumatic life events and health crises unrelated to ME, including major surgery as triggers for downward descent. I guess they could be included as 'pushing the envelope' as far as the body is concerned.
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Yes, they do push the envelope, and I should think that researchers could use these examples to help them figure out what is happening here.

Many of us are desperate for treatments, severe patients are in utter misery and often try self harm because there is no relief for them. Here in Cda, the illness is not studied, and the patient is utterly abandoned, left to rot in a bed at home; no one comes over to help. Take dental cleaning for instance, that is never done due to the patient being bed bound; and exertions to the dentists will be so costly, in terms of long painful relapses.

I am very discouraged because I do not sense any urgency amongst most of the scientific community (some exceptions of course) with regards to this hell that strikes young people. It is actually abusive to leave these people to suffer around the clock in bed. But mention this to a GP in Canada, and they just look like a Canadian deer in a headlight.

Nothing is moving at any proper speed. Yes, money money...


PS: plus let me add that my personal GP said to me that folks who have ME are just "unable to cope," with life!

Miles to go, miles to go.....
 
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This thread has confirmed for me once again that 'ME' is more than one illness.

My illness was never a mystery and it involves a number of distinct phases:

First, there is the initial viral illness. I feel 'odd' and my head is fuzzy. I continue to remain active, ignoring the symptoms. At some point the virus 'does something or goes somewhere' and I develop ME.

Second, I am in the active ME stage. My head is thick, I feel awful but it is also as if I am living constantly beyond the pain barrier. I am also not thinking clearly. As a result I push myself onwards, forcing myself to keep going even though I feel odd. I am in a sense deluded. I think if I can just keep going I'll get better. This phase can continue indefinitely it seems, at least I carried on for two years like this on one occasion. The longer it continues, the worse I am making myself

Third, I am resting but the illness can be set off again by even slightly overdoing it ('overdoing' from a tiny base so even a short walk of a couple of hundred yards). Eventually in the second phase I realize I need to stop. I shut down completely. While I manage to reach down inside of me through the fog and the delusion, to sort of reach base with myself, the illness itself 'comes out' of me and rages like an awful electric storm in my head. I have to wait and rest, and gradually over time, the base grows and I can do a little more, and eventually it seems the switch is turned off and I can actually exert myself to a degree physically while still experiencing the symptoms.

Fourth, I am in recovery mode. I no longer switch the active phase on again. My symptoms remain, though, especially the foggy head, the inability to process information, the sense of living beyond the pain barrier (albeit while experiencing pains, just not aware when active of how I may be doing too much).

I have got to the fourth stage a few times, but keep getting a virus and repeating. Different viruses have this effect so ME (my version) is not one single mystery virus. Upper respiratory viruses (URV) 'go ME' much more easily, so, for example, when I had a stomach virus and was very ill, although I felt it was possible for it to go ME, it didn't. I had one URV in January 2016 and it went ME within a couple of days and I have been stuck in the third phase for over two years.

There is no genetic quality to this type of ME in my view. It was just virus + activity. My immune system is unquestionably damaged. It also seems that I 'go ME' much, much more easily than I did that first time back in December 1985. I do not know whether that is because I have never gone beyond stage 4 into proper recovery or whether once it happens I am permanently damaged.

Because I am living beyond the pain barrier in a strange way and because the illness is always doing something but also always going through different phases, I have no way of knowing when I feel something whether it is just the illness or it is because I really do. This goes for both emotions and for bodily sensations. The only way I can manage the illness is by establishing a routine. I work out what I can do and stick to it. This was particularly important in getting from stage two to three. I would go to bed at the same time and get up at the same time. This was true even when for example I had a particularly bad night in 1992 when the illness was at its worst and I didn't get to sleep till 6:30 am.

I have to follow my routine in order to make sure I do not overdo it, but also it means I know I can complete my routine even though I feel absolutely awful. I'm safe.

It has another advantage in that I do not have to think. My mind cannot handle decisions. By following a routine I have none to make. There was one time when I was living with my parents and the plumber came and turned off the water. I got up and couldn't have a shower. I was in pieces. I went to my room furious and in tears. I was so distressed I banged my head against the wall. I didn't know what to do. I couldn't process the situation. I eventually calmed down and had to work out what I was going to do (as in something basic like having breakfast then a shower).

Over time, as I improve I begin to do more, including going for a walk. When I first start exercising slightly I feel awful but don't trigger the ME. I am pushing at the boundaries of the possible. Gradually this settles down and I can go a bit further. The walk measures how my body recovers over time. Again it's crucial I follow a routine when I am doing this as it's the only way of working out whether I am overdoing it or not. I can only alter one variable, if you like. And I have to monitor things closely with any change just in case I go back to phase two again. I keep asking myself: Am I overdoing it?

You can see from this, I think, where they got CBT and GET from. The ME patients they were looking at were those who had my kind. They mistook helping people cope, helping them establish a routine and then measure improvement over time as the body heals by extending the amount of activity, as a causal link. But it wasn't and isn't. It's maximized pacing with natural recovery.

So, unlike others, I do think establishing a routine, including a pattern of sleep, is very helpful, though only in managing the illness, of course. There is no treatment.
 
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@JohnTheJack
I find a sleep routine very helpful. Getting ready for bed from 8:30pm. Take some zopiclone. Lie down by 9:30 pm. Watch a bit of undemanding TV on my tablet. Lights out by 10pm, earlier if possible. Listen to podcast or Italian vocabulary to send me to sleep. Usually asleep within 45 mins.

If I stay awake later my HR data shows that usually I don't get so much deeper sleep, my sleep is more disturbed and the later I'm up the worse it is. It is also worse if I don't have my "wind down" routine.

I wake during the night and in the early morning and use podcasts / relaxation tracks to doze off again.

I often sleep during the day, and when I do it doesn't affect my sleep at night, even if I sleep in the late afternoon.

I feel more awake in the evening (and ghastly in the morning), but if I try and stay up late my sleep suffers.

Finding what works for the individual is the important thing.

I hate the phrase "sleep hygiene" it's so patronising. I recall the consultant at the sleep clinic said he wasn't surprised I couldn't sleep as I "lived like a hermit". He had no understanding of sleep disturbance in M.E..
 
I don't know anything about severe ME. I particularly don't know how much people with the condition eat, whether they are able to eat, whether they have feeding tubes, what goes through the feeding tubes, or what they eat normally. But assuming that some people with severe ME do eat regularly is there any mileage in testing out different eating plans? For example :

1) High fat, low carb
2) High carb, low fat
3) Different percentages of the diet comprising proteins
4) Carnivore diet
5) Eating a diet with 5%, 10%, 15%, 20% of the daily calories being protein.
6) Eating small meals regularly
7) Eliminating high glycaemic load carbs
 
@Jonathan Edwards,

some thoughts.

I am wondering how to determine that the patient sleep improved? self reporting? Are you going to do sleep studies on them? Or are you more interesting in determining their if their activity level increased with more sleep? sleep is a such complex subject...

another question I have is why are you focusing on severely affected patients? That would seem to be the most difficult group to study. They will be the most physically/mentally intolerant and thus you would run more risk of doing harm to them.

I certainly think the study would need to be longer term, like 3 or 6 months..
 
The sleep discussion is interesting. Our family member had a sleep study done in a lab with a specialist. He determined that she kept waking for microseconds constantly and with great swift regularity (can't recall now the frequency; would have to check on results). He also determined some restless leg syndrome.He also said that the deep sleep was not normal. She has tried every sleep med under the sun, and supplements, and sleep machines galore, and the sleep is not reliable: sometimes yes, there is some hours of sleep, sometimes, often, broken nights. There is never sleep onset of the sort I get. And though she is ready for sleep at 9 or 10, there is no falling asleep until 1 am. Prior to this illness, sleep was normal.
 
Perrier said:
The sleep discussion is interesting. Our family member had a sleep study done in a lab with a specialist. He determined that she kept waking for microseconds constantly and with great swift regularity (can't recall now the frequency; would have to check on results). He also determined some restless leg syndrome.He also said that the deep sleep was not normal. She has tried every sleep med under the sun, and supplements, and sleep machines galore, and the sleep is not reliable: sometimes yes, there is some hours of sleep, sometimes, often, broken nights. There is never sleep onset of the sort I get. And though she is ready for sleep at 9 or 10, there is no falling asleep until 1 am. Prior to this illness, sleep was normal.
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My sleep study was somewhat similar, although it was done quite some time ago. For me, about 10 to 15 mg of amitriptyline in the eve helps me not awake during the night so much, but the sleep is still quite variable and I will be prone to periods of being awake if I overdo physical activity that day. So my sleep quality and the amount of time I am sleeping during the evening is highly variable and good sleep hygiene is not much of a determining factor. There are many (most?) days where for no apparent reason I feel horrible and just have to lie down and sleep during the day, even if I have a full nights sleep the night before.
 
This 100 times. Most sleep doctors do NOT understand ME sleep issues. In the US sleep clinics are huge business.
Daisy said:
I hate the phrase "sleep hygiene" it's so patronising. I recall the consultant at the sleep clinic said he wasn't surprised I couldn't sleep as I "lived like a hermit". He had no understanding of sleep disturbance in M.E..
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I remember watching a presentation by a researcher looking at sleep in ME 1-2 years ago. That was really fascinating. Wish I could remember where I saw it so I could share.
 
Jonathan Edwards said:
I guess you measure not getting worse just by getting the same numbers on your activity measures. It is an interesting point that most clinical trials do not even consider worsening and staying the same is considered failure. But the situation is not unique. There are now a lot of trials of drugs for MS where not getting worse is the sign of success.
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I've commented about this a few times in the past couple of years. If the only kind of worsening considered is when things are bad enough to be considered harms, then that "bandstop filter" effect could mask many deterioration scenarios. I just cannot fathom why harms seem to be the only form of deterioration that get captured. Trials should capture and report on changes, and changes can clearly be both positive or negative. Electing to only acknowledge positively biased data is precisely that - biased. To me it seems blind and arrogant to presume a treatment can only ever be beneficial; no matter what the the beliefs are that feed into a trial, they are just that, beliefs, and should be fully tested. Like testing how a new engine design affects performance when fitted to various cars, but only bothering to record data for those where the top speed is increased, not decreased.
 
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Jonathan Edwards said:
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'.
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One of the hallmarks of ME/CFS is that no matter how well we sleep, we don't wake up in the morning feeling refreshed and full of energy to face the new day. We aren't tired - we are "exhausted". Something that no amount of sleep will fix.

Doing a 'sleep hygiene' trial seems to me to be a waste of time and money. We are all different and what will work for one person won't necessarily work for the next. And your comment "......in a controlled trial that this seems to help people keep well" makes me think that you don't understand ME. I am far from well yet I go to bed at the same time at night (approx 10:30 pm) and wake at the same time most mornings (approx 7/7:30 am) getting about seven to eight hours of sleep each night. If my doctor started giving me advice about sleep hygiene I'd probably be looking for a new doctor. ME/CFS is not a "sleep" problem.
 
Trish said:
Is there such a thing as resting too much?
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As an engineer I sometimes find it useful to consider extremes. Imagine pwME across a full spectrum of severities, from almost healthy, to the most severe of all (as there unfortunately are of course).

At the most severe end of the spectrum the only 'activity' pwME can manage is to simply not die (sorry to be blunt, but that's how it is as I see it); just keeping bodily survival functions going is their limit.

The other end of the spectrum may be less clear cut. The temptation is to presume that if you only have a 'slight touch' of ME, then it really makes no odds, and you could do pretty much whatever you want to. In any case at that minimal severity you probably would not even know you had ME anyway.

But what if any degree of ME, however slight, risks it being worsened by exertion? (Purely speculation, a thought experiment, on my part here). And what if it could start from this barely perceptible onset, into a downward spiral to something more severe, and only once bad enough to be recognisable, might the downward spiral then be arrested as pacing measures then get activated. Could this be how all cases of ME begin, unrecognised at first, until severe enough to become evident. A lot of illnesses fit this broad onset pattern I think.

So for pwME I would think the answer to your question is: We simply do no know yet. There obviously are harms associated with resting too much, but the harms from exercise for pwME are poorly understood in any scientific detail, though sufficiently understood to be sure that there are harms. So when trying to balance the risks on either side of the equation, one side of the equation is littered with unknowns.
 
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