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

It would be v. useful to have evidence for whether/how much rest at the beginning would lead to better outcomes.

others may have mentioned this

 

Reading with interest.

 

Well said

 

I am noticing this, at first I thought it was a simple thing like amount of food, but it's more complicated than that.

...and 400BPM? a typo surely, I'm surprised that these things even have the capability to go up that far.

 

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.

 

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.....

 

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.....

 

@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.

 

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.

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.

 

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.

 

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.

 

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.