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

TigerLilea said:
makes me think that you don't understand ME.
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I admit that I don't understand ME. I assume that nobody does. But it seems you maybe have not understood my suggestion. It has nothing to do with suggesting that ME is a sleep problem. It is theory free, as I said several times. It is simply about getting objective evidence for what sort of advice might actually help. I am very happy to accept that advice on sleep might be a bad idea. But it is currently given and we need evidence one way or another. Otherwise we are just following the BPS brigade's approach.
 
Trish said:
Is there such a thing as resting too much?
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There is certainly significant harm that can come from rest without attention to problems. It is all too easy, particularly for for a child or adolescent, to end up with Achilles tendon contractors that will mean that they can never walk normally again. The warning in the guidelines is not unreasonable. The problem is that it is not put into a suitable context.
 
Jonathan Edwards said:
I admit that I don't understand ME. I assume that nobody does. But it seems you maybe have not understood my suggestion. It has nothing to do with suggesting that ME is a sleep problem. It is theory free, as I said several times. It is simply about getting objective evidence for what sort of advice might actually help. I am very happy to accept that advice on sleep might be a bad idea. But it is currently given and we need evidence one way or another. Otherwise we are just following the BPS brigade's approach.
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What i'm hearing you say (in layman's terms) is that in the absence of any scientifically proven aetiology, is there any advice that physicians/med professionals can give to the severely affected/their carers, (or indeed that can be given to the medics themselves about the best ways to care for severely affected/bedbound), that has any kind of scientific basis to it (rather than either anecdotal patient recommendations, or theory driven BPS ideas). And given that you haven't been able to find any, then lets try & get some. Even if that's only groups of people doing various things (that they might already be choosing to do/feeling is right for them anyway), & that being observed in a formal way & then compared - because even just that would be better than what we have (or rather dont have). Because at present the lack of that is creating a vacuum that's being filled by ideologically driven BPS stuff.
We're not talking about big RCTs necessarily but just things about daily life that can be advised with at least some underpinning that isn't based on whomever's ideas of causation.

Is that about right?
 
JemPD said:
Is that about right?
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Absolutely right.

Except that in a sense I am not asking for a scientific basis because a scientific basis is a supported hypothesis. All we need is an evidential basis. The fact that gold injections can help rheumatoid arthritis is not a scientific fact so much as just something for which we have reliable evidence to be so.
 
Jonathan Edwards said:
Absolutely right.

Except that in a sense I am not asking for a scientific basis because a scientific basis is a supported hypothesis. All we need is an evidential basis. The fact that gold injections can help rheumatoid arthritis is not a scientific fact so much as just something for which we have reliable evidence to be so.
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Ah ok. The proper use of terms is so important & as a layman i find that a bit confusing sometimes. So we want something concrete to base advice on that is driven by formal observational evidence rather than ideas about cause.
Its confusing because i'm just learning that the only reliable evidence is either blinding or objective measures, but i guess the improving/not deteriorating etc would be 'objective measures' if they were measured objectively?
 
Jonathan Edwards said:
Except that in a sense I am not asking for a scientific basis because a scientific basis is a supported hypothesis. All we need is an evidential basis. The fact that gold injections can help rheumatoid arthritis is not a scientific fact so much as just something for which we have reliable evidence to be so.
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So what sort of evidence are we talking about? What would be the terminology? Empirical evidence? Presumably more than anecdotal evidence, because even though the science may not be understood, there is hopefully a degree of scientific rigour being applied to the data that is gathered.
 
Trish said:
Is there such a thing as resting too much?
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I'm one of those with a hEDS diagnosis (FWIW), and too much rest for me will result in problems with injury/joint instability. I have some theraband PT exercises that I do (4-5 reps but absolutely no more) to remind my muscles they must keep working. But if I feel at all worse than Normal Shitty Baseline then I don't do any PT. If I have 3-4 weeks on the trot like that (not uncommon), I start having problems with my shoulders hyperextending when I go to reach for something or my ankle developing tendinitis. After the ME Apocalypse in 2015 from a course of Augmentin for SIBO, I had a lot of problems with pulling muscles and joint instability for the next few weeks as I began being able to get out bed. I wasn't doing anything particularly active but the muscle atrophy from a week of complete bedrest led to all sorts of suffering.
 
Barry said:
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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When activity levels have been measured, it has consistently found a lack of evidence for the hypothesis that activity patterns or "resting too much" is a specific or sensitive perpetuating factor.
 
Trish said:
Is there such a thing as resting too much?
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For me, the answer is Yes. When I was first diagnosed 28 years ago, my doctor wanted me to take it easy and nap for at least two hours every afternoon. I could watch TV if I couldn't sleep, but there was no reading books or moving around. After four months she told me to stop because I was becoming very brain fogged and it was because I was so inactive. Also I get a much better sleep at night when I am more physically active. I don't feel any less exhausted the next morning, but I'm not tired or feel the need to lay down during the day.
 
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Snow Leopard said:
When activity levels have been measured, it has consistently found a lack of evidence for the hypothesis that activity patterns or "resting too much" is a specific or sensitive perpetuating factor.
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I never said it was. I said one side of the equation is that resting too much has the potential for harm in any person, nothing to do with ME. The other side of the equation is that for pwME exercising too much can cause harm due to their ME. Because the science of the latter is very poorly understood, for any one pwME, with their own unique severity and symptom pattern, the break-even point is impossible to ascertain from a scientific point of view. The reality seems to be that pwME themselves likely judge it best ... we call it pacing.
 
TigerLilea said:
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.
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+1
I could write a sleep guide for ME and it would basically say listen to your body, here are the general trends to look out for it you fall into one of them, here is what might help, here is what you can try, don't expect success but these are the known typical patterns.
I developed my own "sleep hygiene" from loads of trial and error and a juggling act of medication and living with symptoms that are not worth forcing. The sleep docs wanted to give me a sleeping pill/stimulant/antidepressant, which would knock me out wake me up and make me feel "good". Its informally known as the narcolepsy cocktail. I told them to shove it.
 
When my son does too much e.g. attending school full-time, his sleep hours increase. Preventing the sleep hours increasing (as is necessary to get to morning classes) just causes the sleep hours to increase further. As I've mentioned a number of times, this eventually led to my son sleeping 20 hours a day. After a month of sleeping 20 hours a day, he began to sleep less and eventually moved back to a more normal sleep pattern. Time and sleep seemed to lead to a recovery to a milder level of ME. My son is now attending university full-time, and his sleep hours are increasing again.

Instructions that sleep to be limited in people with ME, especially for young people are, I think, dangerous.

Firstly, it erodes the relationship between the patient and their carer. Attempts to get the young person up can leave everyone angry and frustrated. Medical advice to limit sleep is setting the carer against what can be an immoveable need for sleep.

Second, animals sleep for a reason. The body has work to do while we sleep, making various chemicals and removing waste. If our energy is limited, our bodies may take longer to do those things. Humans that are growing need to sleep longer. Young people with ME may need to sleep longer to develop properly. Growing is an activity, just as much as walking is.

My sleep patterns are pretty normal. I normally wake up at 6 am as I always have done and sleep about 7 hours. But, now when I have done too much, I will sleep an extra couple of hours or more. The pattern is always 'over-doing things> longer sleep', not 'longer sleep > reduced activity'.

Sleep hygiene in broad terms is not the answer. I find sleep hygiene suggestions patronising and evidence that the person giving them doesn't understand ME/CFS, that they haven't moved beyond the idea that we're just a bit tired and need to get to bed earlier.

That said, morning sun might be helpful in helping to normalise patterns of sleep and exposure of the skin to sun might have some benefits that might be important for ME. So a sleep pattern that has people active in the night, or a need to be in a dark room all the time might be having some negative consequences.

I think a trial aiming to reduce sleep hours in people with ME would have to be very carefully done in order to not be unethical. Having had a son at that severe level with hyper-somnolence, I can't see how it would be ethical to do a study that restricted sleep in people that sick, or even how you would actually manage to achieve such a restriction.

Sleep issues vary a lot from person to person and things change from day to day. Any study aiming to find the impact of sleep restriction would need to be really large and would need to track sleep habits and activity for a good period of time before any intervention so that results could be stratified according to baseline data.
 
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20 ish years ago my most successful sleep pattern was to sleep between about 4.30pm until about 11pm, with some variation but those were the core hours.

I never understood why that was, it was 'inconvenient' as I still felt the need to try and interact with others, and that sleeping slot blocked that.

Several months in that sleep pattern and I was relatively functional, compared with the times before and after it.

Given it was about the same time as 24 hour supermarkets were happening here I used to get my shopping at 3-4am lol

For some reason I've never really done it again, even though I still naturally tend to fall asleep about 4pm.

I guess in the intervening time I've been conditioned into not sleeping/fighting sleep at that time.
 
Deleted one of my previous muddled posts. Apologies.

What I wanted to say in this post was that, from my experience as well as from what people in other threads wrote, many of us struggle with (temporary) severe cognitive impairments that aren't assessed properly.

In my case, I can increase physical activity to a certain degree, but at cost of increasing cognitive impairment.

If cognitive impairments aren't assessed properly, and since severely affected pwME have even more difficulties to communicate, I thought it the consideration should be kept in mind, that better outcomes in physical activity does not necessarily mean that a pwME actually feels better.

It certainly was a big success for people who were completely bedridden if they managed to stand up for a while and move around, but what if they consequently completely lost their ability to communicate?

(Also thinking of Karina Hansen)

(Can't remember whether the issue of properly assessing / dealing with cognitive impairments was of the NICE committees agenda at all? @adambeyoncelowe @Keela Too ?)
 
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MSEsperanza said:
Deleted one of my previous muddled posts. Apologies.

What I wanted to say in this post was that, from my experience as well as from what people in other threads wrote, many of us struggle with (temporary) severe cognitive impairments that aren't assessed properly.

In my case, I can increase physical activity to a certain degree, but at cost of increasing cognitive impairment.

If cognitive impairments aren't assessed properly, and since severely affected pwME have even more difficulties to communicate, I thought it the consideration should be kept in mind, that better outcomes in physical activity does not necessarily mean that a pwME actually feels better.

It certainly was a big success for people who were completely bedridden if they managed to stand up for a while and move around, but then completely lose their ability to communicate?

(Also thinking of Karina Hansen)

(Can't remember whether the issue of properly assessing / dealing with cognitive impairments was of the NICE committees agenda at all? @adambeyoncelowe @Keela Too ?)
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So I can't really talk about confidential stuff, but cognitive problems appear in all the major criteria for ME/CFS and we have discussed those criteria already (at length).
 
JemPD said:
Ah ok. So we want something concrete to base advice on that is driven by formal observational evidence rather than ideas about cause.
Its confusing because i'm just learning that the only reliable evidence is either blinding or objective measures, but i guess the improving/not deteriorating etc would be 'objective measures' if they were measured objectively?
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Barry said:
So what sort of evidence are we talking about? What would be the terminology? Empirical evidence? Presumably more than anecdotal evidence, because even though the science may not be understood, there is hopefully a degree of scientific rigour being applied to the data that is gathered.
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The trouble is that what we are concerned with, as I have recently been trying to make clear for NICE, is the psychology of gathering evidence. The irony is that the psychologists seem to be the least good at this. The need for either blinding OR objective measurement is to do with the psychology of subjective bias. If there is a reason to want to think you are finding something then you have to make sure your measurement is objective and safe from bias. If there is no reason to prefer finding this or that then subjective measures tend to be good enough.

What really screws things up is that people want to find something because they think somebody else (the researcher) wants to find something. So the psychology of trials is a lot about the mistaken idea that people are 'helping' the researchers by reporting what they think is desired.

In the context of testing sorts of advice the advice is clearly not going to be blinded. So maybe we need objective measures. I think the more objective the better, but some important things are hard to measure objectively and we do not want to ignore them. But if the trial is done in a theory free way - perhaps making use of trial technicians who have no interest themselves in any theory or advice but just explain the plans, then the patients do not have any reason to think the researchers want a particular answer. So the need for objective measures is much less. This is what Keith Geraghty was getting at in his PACEgate paper (or maybe the next one).

The whole thing has to be thought of as like a game of chess or poker. And there aren't necessarily any hard borders between objective and subjective or blinded and unblinded. A blinded trial is a trial blinded to which treatment is designed to be the active test. If none of the treatments or advice is any more the active test than another then the trial is in theory blinded after all.

So terminology gets fuzzy. The evidence/science distinction is also confusing. Science is defined as those ideas that can be tested with evidence. So you might say that evidence base is science base. But sometimes the idea is so trivial it really does not count as science. What about the idea that the teapot is on the table. You can get evidence for that. But nobody calls it science. The assumption is that a scientific idea explains in a way that can be made a general rule about causes. My idea about what plans are helpful for PWME is not really a scientific idea because it does not involve explaining with a theory or generalising as to when it might otherwise be true or not.

Sorry about all this. But maybe this illustrates a bit how it is that people doing trials in ME have got things so badly wrong. It is all very complex, but on the other hand it is no more than common sense about human nature. What has been lost sight of is the common sense about how people behave.
 
Now having said all that there is something that I realise makes my idea very tricky.

If you are advised to do something and at the same time told that nobody knows whether or not the plan is useful - as would be ethically required by any trial like PACE (which nobody involved seems to have thought of) - then it isn't 'advice' in the usual meaning. Advice assumes a reason to think the plan is well founded - at least that somebody thinks it is. And the idea here is to ensure nobody thinks anybody thinks they know.

This is the standard situation for drugs trials and it works OK but for advice trials I can see that it might not. Food for thought.
 
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