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

[TigerLilea]

Is it possible that the more severe a pwME is, the more confounding factors there might be? e.g. A severely ill pwME will almost certainly also be deconditioned; etc.

I would think that a person who gets very little physical activity during the day, especially long term, would be more likely to have problems with sleep.

 

[Milo]

We are going in circles. There is no evidence. Accumulated clinician experience has not been published in scientific journals. There has been little if any formal trials in what care should be like for ME patients. We are still told we need CBT. In fact some clinicians have made it their whole careers and no, I am not talking about Wessely and co.

The way forward is to build knowledge through observation and the scientific approach. Our big problem is that there is not even structure to do that. Clinicians have full schedules seeing patients from morning to night, and have no time for research. Researchers need to get funded or somehow need to be paid. Clinicians able to do research and trained to do clinical trials are few to none. Then who takes on the responsibility of administering new potential treatments? Who reports successful use of off-label medication? How can we learn something new if clinicians work in silos? How are physicians supposed to learn anything if patients have given up seeing them and instead see naturopaths ?

On the other hand, there are very very few registry for patients to accumulate their data, test results and evolution of their disease. We are not even counted or tracked. If only we could study the natural history, if there are no treatments to be given?

Wouldn’t it be interesting to know whether the uk has a greater prevalence of severe patients compared to the US?

 

[Inara]

But it has no particular effect on illness severity, short and long term

I agree with the 9-5-part - the "good" people go early to bed and get early up; the good people are disciplined. Personally, I think that's part of the ideology that is behind sleep hygiene. Even if I were healthy I'd reject that, alone on these grounds. Additionally, my experience as a healthy person was that I have a biorhythm - and I suppose every being has - and that living against it is bad for health on the longer run.

I don't agree that (ideology driven) "sleep hygiene" has no effect on severity. I think it can make the status much worse. I think most people with ME develop their own "sleep hygiene" with time and given the circumstances, and they need to listen to their bodies/biorhythm. Maybe that is what some people can learn.

 

[lansbergen]

I would think that a person who gets very little physical activity during the day, especially long term, would be more likely to have problems with sleep.

I think my insommia was from overdoing.

For the physical activity. Are the involentary movements not physical activity?

 

[lansbergen]

I don't agree that (ideology driven) "sleep hygiene" has no effect on severity. I think it can make the status much worse. I think most people with ME develop their own "sleep hygiene" with time and given the circumstances, and they need to listen to their bodies/biorhythm. Maybe that is what some people can learn.

Yep

 

[Barry]

I would think that a person who gets very little physical activity during the day, especially long term, would be more likely to have problems with sleep.

Maybe, not qualified to answer that. If you look at extremes, then someone who is confined to bed all day with virtually no activity other than staying alive, must inevitably become deconditioned, whatever health condition it is that confines them to bed. So I was just saying that a very severely ill pwME will likely have significant secondary issues, and they might be confounding factors, but I'm not qualified to know which is why I was asking.

 

[Peter]

Maybe, not qualified to answer that. If you look at extremes, then someone who is confined to bed all day with virtually no activity other than staying alive, must inevitably become deconditioned, whatever health condition it is that confines them to bed. So I was just saying that a very severely ill pwME will likely have significant secondary issues, and they might be confounding factors, but I'm not qualified to know which is why I was asking.

Deconditioning can be defined as the multiple, potentially reversible changes in body systems brought about by physical inactivity and disuse. ... Decline in muscle strength and muscle bulk is the most important and consistent feature of deconditioning.

I think it is a valid conclusion that the ones in the extreme spectrum, in bed 24/7/365 will definitely decondition in addition. The important point I will make here, is that the majority of ME-patients not are there. But many are quite close to the extreme spectrum. So what about them in the sense of deconditioning?

Really dislike categorizing, that’s not doing anything good for ME-patients in general, so won’t do that, but let’s just say that the majority of ME-patients not are continually bedbound. That don’t necessarily mean that much, many are bedbound > 20-23 hours a day. But the important thing here is that 1 or maybe 2 hours not lying flat. Patients probably don't get around, maybe just moving inside the apartment/house, maybe garden or just outside. The point is that they do move some. But bodily deconditioned? Hmmm. I guess not if you have some minimum movement, but not sure. That probably depends on how strict you define it. If extremely strict, it may be otherwise.

But anyway, the thing here is, - that if you (BPS’ers) argue that deconditioning is cause of ME, well you have understood absolute zero, zip, nada of ME.

But that’s what the BPS-brigade tells us. Patients are bodily decontioned, a direct consequence of being deconditioned in mind (falls illness beliefs and so on).

Thank you. Thank you to BPS’ers for simple stupid answers to complex problems. Thank you from many people who used to be extremely fit ,obviously now the value and joy of moving and dream more than anything of moving like they used to.

 

[boolybooly]

It makes good sense that we should be trying to understand what helps.

I am afraid though part of the difficulty is the intractability of the condition.

If there was a genuine cure the news would spread like wildfire via the net.

I have had 30 years to try to find what helps and have found primarily that I need to respond differently to different predicaments the condition creates to prevent negative extremes but nothing thus far will abolish the syndrome. I have tried to collect my observations in a blog in case it helps others. https://boolyblog.blogspot.com/

I find the helpful behaviour is to rest and pace and listen to my body and respond with sympathy to any discomfort. As for activity doing nothing is always better than doing something except for strategic interventions in diet and regular stretching exercises and occasionally meditation aimed at reducing mental activity to a minimum, the last two definitely assist sleep.

Otherwise most of what I do is a trade off between resting, doing chores, entertaining myself or doing something constructive which supports self esteem and personal morale. I am largely housebound but managed to avoid becoming bed bound at the point where it could have been so, my guess is because I did a lot of rowing training for endurance fitness at college. That is not something you can do after you get ME, I have found zero anabolic response to exercise since onset and I tried quite hard in the early years, exercise is IMHO definitely not helpful. I may be atypical though because I have always had perpetual regular bouts of strong diagnosable viral activity which creates a cycle of viral illness and partial recovery followed by another bout which produces a couple of days every couple of months between viral episodes when I feel less dreadful. So the immune response is so severely stimulated it has to fight back as it were a "dead cat bounce" despite an underlying failure of some part of it. So this cycle has broken up what might have been a slow and steady decline.

Pressurised interventions of any kind are not helpful psychologically. People with ME need to be able to relax because tension uses energy. This is exacerbated by the way the nervous system often becomes hypersensitive in ME, which may be related to emotional lability and also sleep hygiene is a particularly delicate matter since sleep is a neurological state. I find my sleep rhythm very easily disturbed by cognitive factors and the best way to get better sleep is to have nothing to do and feel a bit bored. Any kind of pressurising regime would be counterproductive.

Nutrition is a major category for helpful things and falls into two categories, things to take and things to avoid.

e.g. some days I need to go anti-inflammatory and take Kirkman B-vits, plus B12 (methyl) and zinc, other days I need to support energy and will take D-ribose and L-carnitine. Other days I have bad cramps and need to boost calcium (especially after exposure to sunshine) and use cramp bark tincture and other days I have heart arrhythmia and need to boost Mg. In winter I need vitD and extra calcium (I dont eat dairy). I also need plenty of salt including extra potassium from Lo-Salt which I take 50/50 with iodised salt.

I have experimented with ketogenic diets and find I cannot live without carb but too much is also detrimental. I do well on a lipid heavy diet but it has to be the right lipid, coconut oil is harmful due to high MCTs as discussed in my latest blog. I believe might be partly the reason I dont do well with dairy, which also exacerbates my allergies. But heavier veg and nut oils are fine.

I feel like a guy in a leaky boat on the high seas, deciding which leak needs plugging on a daily basis! I listen to my intuition in that regard which sometimes picks up on conditional relationships in my environment I have not consciously recognised.

The best ameliorative I have found is hop tea.

Hop tea with marigold, damiana and bucchu,
proportions 8:4:2:1 respectively, by volume of dry herb.
This mix is a very mild tranquiliser with hepatic tonic due to bitter principle (hops)
and immune tonic (marigold)
with nerve tonic (damiana)
and urinary antiseptic and anti-infective (bucchu).

I find it helps especially during a rubbish patch.

Another one is cramp bark tincture, which is a mild but effective anxiolytic especially good at alleviating cramps. Though attention to mineral balance is always recommended for cramps (especially Ca / Mg & Na / K).

I have to strictly avoid all nightshades, which set off some kind of inflammatory mouth ulcer generating reaction. I feel lousy if I eat them now. I avoid caffeine drinks entirely and stimulating foods with high amine content, I avoid all stimulating "anti" inflammatories (i.e. stimulating immune suppressants with adrenalin like action) also MAO inhibitors as in nutmeg and olive oil and quercetin as in onions which act to prevent eliminating stimulating amines.

These are the kind of strategies I find helpful, FYI. Hope it helps

P.S. I forgot to mention environmental temperature, since a few years after onset I have experienced neurological rigours (shivering fits of unusual intensity) as a result of getting cold. But ever since the swine flu epidemic I have had temperature dependant viral recurrence as well, so if I got chilled I would catch cold, very easily. After several years the full blown cold has reduced but I experience relapse like episodes resulting from chilling. As a consequence I have to keep my environment at around 27°C and must use synthetic fleece headwear like hoodies and beanie hats and zipper jackets to assist with avoiding chilling, of my head in particular, if I am in an environment of lower temperature, even just one degree cooler.]

P.P.S. I also have to be very careful about lectins now or I get headaches, this means cooking all the lectin containing foods for long periods, e.g. red lentils are fine as long as I boil them for 35 mins minimum, likewise maize based foods. If I undercook them I get headaches. Ditto green veg and nuts with skin on. This is a recent development subsequent to a coconut diet which I have now stopped, see my blog for more on that, I think they are related and coconut medium chain triglycerides may increase inflammatory responses for some people.

 

[Sly Saint]

Except that as far as I know there are no studies comparing impact of advised sleep plans - if only to show that 'sleep hygiene' should be removed from guidelines.

Trying to standardise sleeping times for moderate patients might work when it might be disastrous for severe patients.

I am surprised that no one has looked into why some pwME sleep a lot and others have problems being able to sleep. Or whether this is associated with the stage of the illness (ie sleeping more earlier on).

Although both are 'unrefreshing', I don't think, until this has been properly assessed, you can say that any particular sleep regime is better for everyone.

 

[duncan]

I am surprised that no one has looked into why some pwME sleep a lot and others have problems being able to sleep. Or whether this is associated with the stage of the illness (ie sleeping more earlier on).

Maybe sleep is a canary in the coal mind. What part(s) of the brain regulate sleep?

So much speculation. It's sad we do not know even why one of the common grounds among most pwME is screwed up. And that's not peculiar to ME - we just don't know enough about sleep.

I still worry that sleep is a slippery slope because of the contrived nature of the CFS component. It cries out to the baser qualities in insurance and State agencies.

 

[Arnie Pye]

On the other hand, there are very very few registry for patients to accumulate their data, test results and evolution of their disease. We are not even counted or tracked. If only we could study the natural history, if there are no treatments to be given?

There is this website : https://www.patientslikeme.com/

Apart from knowing it exists I don't know anything else about it. It does have a section on "Myalgic encephalomyelitis/chronic fatigue syndrome".

https://www.patientslikeme.com/conditions/cfs

There is also a forum for people with "Fibromyalgia and ME/CFS" with 119368 members, 341k+ posts, and 21k+ topics according to their own statistics.

 

[Mij]

I am surprised that no one has looked into why some pwME sleep a lot and others have problems being able to sleep. Or whether this is associated with the stage of the illness (ie sleeping more earlier on).

Sleep patterns can change over the years. I have gone through stages of hypersomnia (dead body aching fatigue) for months at a time, couldn't lift my head, and then reversed to severe insomnia. It has no affect on my ME state though.

 

[rvallee]

Deconditioning can be defined as the multiple, potentially reversible changes in body systems brought about by physical inactivity and disuse. ... Decline in muscle strength and muscle bulk is the most important and consistent feature of deconditioning.

I think it is a valid conclusion that the ones in the extreme spectrum, in bed 24/7/365 will definitely decondition in addition. The important point I will make here, is that the majority of ME-patients not are there. But many are quite close to the extreme spectrum. So what about them in the sense of deconditioning?

Really dislike categorizing, that’s not doing anything good for ME-patients in general, so won’t do that, but let’s just say that the majority of ME-patients not are continually bedbound. That don’t necessarily mean that much, many are bedbound > 20-23 hours a day. But the important thing here is that 1 or maybe 2 hours not lying flat. Patients probably don't get around, maybe just moving inside the apartment/house, maybe garden or just outside. The point is that they do move some. But bodily deconditioned? Hmmm. I guess not if you have some minimum movement, but not sure. That probably depends on how strict you define it. If extremely strict, it may be otherwise.

But anyway, the thing here is, - that if you argue that deconditioning is cause of ME, well you have understood absolute zero, zip, nada of ME.

But that’s what the BPS-brigade tells us. Patients are bodily decontioned, a direct consequence of being deconditioned in mind (falls illness beliefs and so on).

Thank you. Thank you for simple stupid answers to complex problems from people who used to be extremely fit and dreams more than anything of movement like previous life.

So ironically the only patients who could meet the definition of deconditioned, the severe ones, are those for whom GET, a "treatment" for deconditioning, has not been tested on (aside from FINE, which was a failure) and is not recommended on because it has not been properly tested.

Basically as ridiculous as a treatment that involves doing something to an inexistent organ. Smart. Very smart, folks.

 

[rvallee]

If there was a genuine cure the news would spread like wildfire via the net.

One consequence of the cognitive-behavioral paradigm, one that cannot be avoided and is basically axiomatic, is that millions are refusing safe and effective treatment just because they don't like what it says, remaining in a level of disability comparable to MS and costing billions in economic burden every year, wasting entire lives out of malingering.

The "treatment" is out there, "tested" and available, yet there has been no measurable improvement on a population level, in fact as best as we can tell the numbers of diagnosed are rising. Since those numbers are rising, or at best staying flat, despite there being a safe and effective treatment, it follows that it is simply refused out of stubborness. This consequence cannot be detached from the paradigm.

Which is, of course, silly beyond all reason. I have so far not seen anyone demanding an explanation for why it "works" only for a tiny few (despite there being no measured objective improvement on an individual basis) and why there is no measurable improvement on a population level, the only useful measure of success. Complete and utter failure of duty of care and basic professionalism.

 

[TigerLilea]

Wouldn’t it be interesting to know whether the uk has a greater prevalence of severe patients compared to the US?

It would be interesting to know if there are countries, and areas within countries, with a greater prevalence of ME, especially severe cases. The only problem I see is that ALL countries would have to be using the same definition of ME. There can't be a mix of the Canadian Consensus Criteria, Oxford Criteria, Fekuda Criteria, etc.

 

[TigerLilea]

I think my insommia was from overdoing.

For the physical activity. Are the involentary movements not physical activity?

I guess it depends on your definition of physical activity. We need to be doing something that gets our heart rates elevated and I can't see that involuntary movements are going to do that.

On the days were I do too much, I find it harder falling asleep, but when I do get to sleep it tends to be a much deeper sleep.

 

[Milo]

There is this website : https://www.patientslikeme.com/

Apart from knowing it exists I don't know anything else about it. It does have a section on "Myalgic encephalomyelitis/chronic fatigue syndrome".

https://www.patientslikeme.com/conditions/cfs

There is also a forum for people with "Fibromyalgia and ME/CFS" with 119368 members, 341k+ posts, and 21k+ topics according to their own statistics.

That is not what i would call a patient registry.

 

[lansbergen]

We need to be doing something that gets our heart rates elevated and I can't see that involuntary movements are going to do that.

What if the heart races from just laying still?

 

[Barry]

But anyway, the thing here is, - that if you argue that deconditioning is cause of ME, well you have understood absolute zero, zip, nada of ME.

Hopefully that was just a general comment and not specifically for me, because I am 100% aware of what you say as a good number of my posts show.

 

[TigerLilea]

What if the heart races from just laying still?

Getting your heart rate up from physical activity and having a racing heart when lying still are two very different things with two very different causes. You can't compare the two.