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

You make some very good points.

Perhaps you want to look at some of the following (based on advice and recommendations i’ve seen amongst pwME):

* ear-muffs (or sound avoidance) vs noise habituation (which is something I’ve seen recommended to non-pwME)
* light control vs light habituation (again, in a very gradual, responsive manner)

The point being to see whether trying to tolerate a little more light or sound is helpful or if confidently cutting it out gives better outcomes for the patient. (My own experience was that being told that wearing earmuffs when needed is ok really expanded my ability to do a few more things - or just to cope).
As you say, testing the advice or modus operandi, not the degree of conformity to the advice.

* advice to rest and relax as much as possible vs advice to not push yourself too hard (very different - one is a positive goal to clear the head and really rest as much as humanly possible, and the other is to let yourself try within your tiny limits)

* drinking and electrolytes

* assisted stretching/limb movement

* catheter vs pads vs assistance to the loo (not sure where to put medications like loperamide as not all the same problems)

* # hrs access to internet and category of activity (educational, essential communications, activism, social, research/investigation, ...??) ...not sure about this one.

* low carb / keto vs unrestricted ... ?

* level of household assistance available (full time vs a few hours a day and executive assistance vs less)

 

I would too.
In my case, I was wrong.
Over months and years of recording the results for myself (recording a range of whatever I could think of), and only later going back to assess, I confirmed (for myself): PEM => sleep difficulties + reduced function, rest => improved sleep + improved function, however improved sleep <> improved function.

ETA2: prior to this current illness, what you said (getting little physical activity makes problems with sleep more likely) was indeed true for all my experience and for all those people I had known. I would still recommend getting a bit more active to almost everyone who is not active ... I just know now that there are exceptions.

ETA: my point = we don’t know how this works for pwME, or even if the same advice is applicable to all.
I think we have enough preliminary observation to say that “more activity (within limits) improves sleep” is not always true. Blew my mind when I found that for myself. Assumptions bad.

 

Absolutely not addressed to you, but solely the BPS-brigade and everyone else making a mess of ME and deconditioning. They are surely missing the target by a thousand miles.

 

I don't have the energy to read all the comments so sorry if I am repeating something. If you are looking for evidence and carry out an experiment over a period of time please make sure that you are clear that correlation isn't always proof of causation. I say that because I wear a pedometer. Have done for years now. I don't use it to actively control my steps. I look at it afterward to see if there are patterns in my activity and how that fits with how I am feeling. I can say for definite that without any need to persuasion I will always always do as many steps as I can. I live in frustration at what I can't do so of course if I have a little more energy I do more. It isn't always good for my long term health and maybe doing a little less might help.

If you look at my data you will see that more steps correlates with feeling a little better. Not because doing more steps makes me feel better but because when I feel better I do more steps naturally. I know that it isn't causation because if I do more steps when I'm not feeling better it leads me to feeling worse. If you were setting out to prove that doing more steps makes us feel better you could use my data as evidence but the opposite is true. Actually, if you look further you will see that if I am in a bad patch for whatever reason that the only way to get out of it is to do slightly less steps over a sustained period and then my health slightly improves. I worked as a research engineer/scientist and so of course I can't help but to use data to try and help myself so I have tried to look for the patterns. I am never dramatically better, just long and short term variations in my health.

I hope that might help if you are thinking of trying to quantify the effects of various things. I can also say that for me looking over the course of a week isn't anywhere near long enough. I actually have a yearly cycle that I can see on my graphs and effects of various things can last many months or even a year. Shorter term changes can be misleading or subtle but the longer term trends I think for me carry more information.

 

That is true for me too. I have the opposite of what I used to experience when well. The more I do the worse my sleep is and if I am careful to keep within my limits my sleep is better. However I always do as much as I can within my limits so haven't tested what happens when I do a lot less than I am able too. Maybe then I won't sleep so well but I have no data for that.

 

I may be misunderstanding something. Does the "we" in this sentence mean ME/CFS patients? Can you help me understand the need for elevated heart rates?

Maybe it's different for different subgroups of patients?

My experience is more like @Subtropical Island and @fds

When I first started to recognize this pattern (more rest during the day = better sleep) I remember thinking, "It can't be! Activity always makes people sleep better! Everyone knows that!"

Over the years I've seen a clear positive correlation between doing less and sleeping better that night. And I've seen it reported by other patients in forums like this one.

For me, "sleeping better" doesn't mean falling asleep faster. Unlike many patients I have little trouble falling asleep.

"Better sleep" for me means staying asleep and not waking up between 10-14 times during a period of 7 to 8 hours of sleep.

And I know it is not sleep apnea that's waking me up. I've been tested. Zero episodes of apnea.

For me this was one of two weird aspects of my illness:

1. Unlike those 29 years before ME/CFS, I can no longer build up stamina by doing more.
2. Resting during the day makes my sleep that night better, not worse.

I have no idea why either of these are true. Both are the opposite of what I expected.

I hope this has not strayed off topic too much. It's about sleep issues but nothing to do with ideas on how to collect data/evidence that will teach us something about ME patients.

 

"We" as in everyone, with or without ME/CFS. Our hearts are muscles and need to be exercised like any other muscle. Also, lack of physical activity can also lead to dementia which I certainly don't want as I get older. Obviously for those of us who can be somewhat active, we certainly aren't achieving the same levels as when we were pre-ME, or what other, "normal" people can achieve.

 

Patients who are at severe levels of ME (especially) don't want to hear discussion of deconditioning, it's an insult and very distressing to the very sick. They are in a desperate situation where slight exertion makes their symptoms even more intolerable. There is no choice but to rest.

Unfortunately, ME is like nothing you have ever experienced until you get it. If you don't lie down, ME will make you. There is no choice.

I was someone who liked to keep toned and I was very active before ME took me down. I remember my anguish in my severer years when even hearing someone mention the word exercise caused me great distress. Which shows just what ME does to a person who was never one to lie down during the day and who was a motivated, active person.

The truth is that the majority of ME patients (? others correct me please if you feel different) will be getting out of bed when they shouldn't be, in a very ill state to have to attend to something that needs to be attended to. If only I could transfer how my body felt in those severe years while having to go do something. They would be shocked and tell me to go back to bed.

 

I’ve not got the capacity to read through this thread at the moment so apologies if what I say has been said.

First, thank you to @Jonathan Edwards. The ME community owes you a huge debt of gratitude for taking this on, along with all your other voluntary ME related work. If only we could get more retired doctors involved.

As someone who has has been ill since 1992 and gone from bedridden for about 7 years to mostly bedroom-bound for another 7 years to now being able to get downstairs nearly every day and outside in my wheelchair a bit, I hope my experience may be of some value.

To me the most important part of management of people with ME or any other condition is to treat them with dignity and respect. That should go without saying but it is something that the medical profession has failed to adhere to with ME. If a medical professional feels that they are being kind or generous by appearing to treat people with ME the same as they would treat patients with other similarly disabling conditions then they have already failed in their duty of care.

Although the quality of my life is less bad than it has been, I don’t know whether my underlying condition is any better or worse than it was when I was at my worst or whether I have just adapted better to it. I suspect that if a I was to return to trying live as a was before I became very severe I would quickly end up in the same state or worse than I was at my worst.

The the most import things I’ve done which I feel have helped to improve the quality of my life are accepting the need to limit myself and for disability equipment. When I was bed-ridden I would still struggle to the bathroom and back once a day to go to the loo. Now I am not bed-ridden but I use a wheelchair to do the same journey along the landing. I also have an intercom system to speak to callers and open the front door from my bedroom, a fridge and microwave next to my bedroom, a manual wheelchair on each of the three floors of my parents’ house (where I live), two stairlifts, two powered wheelchairs (one for garden, one for road level), a wheelchair accessible vehicle, £100s of pounds worth or arctic clothing for going outside in summer etc. etc. In the past I would struggle to try to walk from the car to a doctor’s room for an appointment and then be in so much pain, fatigue and discomfort afterwards that I wouldn’t be able to even read the newspaper headlines for days or weeks after. Now, I always do less than I’m able to do at any given time, I almost never push myself to my physical limit, or close to it, because, after years of obstinacy and denial, I now reluctantly accept that this ghastly, counterintuitive, sometimes humiliating and always frustrating approach is the best way to maximise my participation in social, recreational and intellectual activities, within the confines of my illness. Paradoxically, doing less enables me to do more.

It is worth noting that, despite the severity of my illness, none of these mobility aids were recommended by any medical professionals. The only advice I have ever been given about such aids was from an OT who told me – after I had been bed-bound for several years – that I shouldn’t buy a stairlift because it might diminish my motivation to walk up and down the stairs. Unless you have experienced it for yourself, I don’t think you can ever fully understand how uncomfortable it feels as a young person to have to use a stairlift in order to get up and downstairs. For a long time I would never use it in front of any visitors – I would always make sure that they were out of the way before going up or down because I felt so embarrassed to be seen using it. The idea that I would ever use this or any other mobility equipment if it was not necessary to improve the quality of my life is both preposterous and offensive.

With regard to sleep, my pattern is still quite badly effected – I go to sleep late and I wake up late. My anecdotal experience is that trying to impose a strict routine or restrict my sleep in any way has not been helpful. I find that the quality of my life is better if I accept that my time clock is skewed and that I need more sleep than healthy people. I also often find that I benefit from sleeping in the afternoon if I am able to.

I don’t know if this counts as management but I also feels that changing my diet and taking supplements seems to have helped a bit. I have also found ice-packs to be a useful way to numb the discomfort I experience, particularly in my face and at the back and side of my head.

My feeling is that with regard to the Guideline, it may be as important to emphasise what medical professionals should not do rather when they should no. Doing nothing other than listening to patients and treating them with compassion, dignity and respect, and admitting our ignorance, would be preferable to to being mistreated and given bad advice.

I also think it’s important to emphasise that different approaches may be appropriate for different patients. We don’t know whether all or most people with ME have the same illness, and even if we do it may be that different people will respond differently to different management approaches, and also that the same people may respond differently to same management approach at a different state in their illness.

In a world of infinite resources it would be great to be able test different management approaches in clinical trail but given the very limited funds available for any type of ME research I would be very disappointed to see more money going into more behaviour studies looking at the effect of regulating sleep etc. instead of going biomedical research. There is also the risk that if different illnesses are conflated the data may be uninterpretable. What if ME was two disease, one which benefits from management approach A and one which is made worse by the same approach?

I know some people will say it doesn’t have to be one or the other, but for me the priority must be biomedical research to develop diagnostic tests and effective treatments.

In writing this post it occurs to me to mention a sort of paradox which I’ve often considered but never expressed: I accept the need for objective outcome measures in unblinded trials, or least that unblinded trials with subjective outcomes are uninterpretable. However, as a patient, the most important thing to me is how well I feel. There are days when I am to get up and function at a certain level without making myself worse – say, sitting in a chair, speaking on the phone or reading the newspaper for a certain amount of time – but my level of pain and/or discomfort is such that the quality of my life is still very poor. I have often said that, despite being desperate to do more, I would rather do less if it made me feel more comfortable. In fact, as well as all the physical and mental activities that I would love to do if my health ever returns, one of the things I wish for more than anything is just to be able to sit in a chair and feel comfortable and relaxed doing nothing. If I could trade all those years in bed in terrible pain and discomfort for the same amount of time in bed feeling exhausted and drained of energy but comfortable and relaxed my life would have been infinitely more bearable. But how can one measure such things in unblinded trials? Is it impossible? And if so, is there a risk that management approaches which improve the quality of life of patients but do not effect outcomes which can be measured objectively may be overlooked?

Sorry this is a bit of a ramble. I’m not feeling well enough to write anything more succinct at the moment, but I wanted to get something down because it’s such an important issue. I hope what I’ve written may be of some use.

 

I agree.

Nothing wrong with admitting they do not know.

 

There is a risk but in my experience if you are sensible about what objective corroboration you could get for even the most subjective things you can do an awful lot better than has been done so far. You can also make use of 'role-playing neutral' studies using credible sham treatments and uncommitted treatment deliverers (as Keith suggested) and achieve a lot I think.

 

That's about half the needs right there. The disrespect, even contempt, is profound. It's no wonder prognosis is horrible when those in charge of our medical care disagree that we need medical care. Everything else flows directly from this. The disastrous status quo is the outcome of deliberate choices and those choices are all founded on profound disrespect and casual indifference.

Not much can improve until this changes. There can't be appropriate medical care on a foundation of contempt. We are essentially disenfranchised, to make a comparison to civil rights. Zero surprise that the outcome is disastrous, it's basically designed this way.

 

Dear RVallee: your comment is very apt. The humiliation that patients suffer is horrible for me to observe. I recall we had to go to the ER to get help with a blocked pic line. When we told the doctor our family member had ME/CFS and was bed bound. He said to her: "just try to do more exercise, try to move around more, and you'll feel better." I was not up for another quarrel, and certainly not in the Canadian health care system, where the patient is considered to be "lucky" to even be seen at all. The contempt is intolerable: we have been to the usa, to the Uk, to Germany, to Switzerland, to Belgium, and other countries. The contempt for this condition was everywhere, except in Switzerland--because there we were at a private clinic. The superiority of the regular physicians (not the ME ones) was so unpalatable, that I just had to look the other way, otherwise, I knew I would develop some kind of anxiety condition. This road had taught me some horrid things about the medical system in our time. I repeat myself here: there is no urgency to help these patients; none whatsoever. Certainly, here in Canada, we are utterly abandoned; imagine that--abandoning a young person in a room who is unable to fend for herself.

 

Agreed. I think subjective measures of pain, nausea, dizziness and so on are just as important as objective measures of activity or tasks completed (or whatever objective measures are used to show improvement).

I don't claim to know how to measure these things! But thank you, @Robert 1973 , for articulating something that I meant to comment on earlier when there was discussion about how to measure improvement.

 

I have picked out the bits of Robert's post that I want to comment on.

First, I totally agree about the mobility aids and other aids. I too am embarassed and ashamed (and I know I shouldn't be) to be seen using the aids that I use. There is no way at all that I ever would choose to use them is I had any choice at all. The idea that I would rather use a mobility scooter than walk is totally wrong. I would far rather my legs and body worked a little better and I wouldn't need them at all. In fact sometimes I don't use things I ought to.

Second, I totally agree that to be believed and treated with dignity and respect is far better than advice that is inappropriate to me and goes against all the lived experience I have at trying those things.

Thirdly, I also agree with improvement in how I feel being worth having although harder to measure objectively. I found that when I finally had to give up work I could pace myself better. I couldn't physically do much more but because I could rest and pace properly I didn't feel so dreadfully ill all the time with all the things we all recognise (pain, nausea, cramps, brainfog, vertigo etc) improving. If you were to just measure physical activity you wouldn't have seen any improvement but to have less of the awful symptoms was truly an improvement that I appreciated.

I hope this helps

 

Yours and @rvallee are both very accurate of the Canadian medical system. The superiority complex held by the average GP in Canada is unbelievable unless you witnessed it. I worked in engineering before becoming ill and the 'Engineers Ego' was often commented on, but even the worse case of it does not compare to the average GP. The specialties such as Urologist, Gastroenterologist, etc... I'm not sure are even human beings anymore. I don't dare mention I even have ME now otherwise any medical condition I have will be ignored. I went to hospital Xmas day with a severe UTI but when the ER doctor found out I had ME I was told I had a 'disease of the mind' and sent home completely untreated. To get antibiotics and help with the infection it took in total 5 hospital trips, and 3 mediclinic visits. I kept getting turned away. One mediclinic doctor, when she found out I had ME and what it was, told me not to come back for anything, knowing I had an infection. Was told I am too complicated and time consuming. I'm not sure guidelines would even help in Canada, whats really needed is a specialty. Sorry a bit off topic for what Jonathan was looking for.

 

The talk of dignity and respect mentioned is really important.

However I do think this is a wider issue and sadly it’s unlikely that change will come about even if we had it written in guidelines , had a diagnostic marker or a treatment that works...stigma will still persist with these things in place. Just asking medical professionals to do this for PWME is unlikely to result in it actually happening.

The best we can hope for is to define specifics of care making medical professionals do their job a little bit better/have a reference to the standard of care required.

There are plenty of medical illnesses that have a diagnostic marker and medical treatments in place where patients are still being treated by medical professionals and the public with a lack of respect and dignity.

There is a lot of stigma out there and it seems to float around invisible, chronic illnesses and conditions that make people feel “uncomfortable’ That’s just how people are...they won’t change just because we get the NICE guidelines to write something down...much to my annoyance. Many medical professionals seem to carry the same prejudices, despite many trying to hide them behind a mask of detached professionalism.

Generally from my experience people prefer illnesses to :

• be acute not chronic (people’s sympathy/empathy is not sustainable)
• Have treatments that you have a chance of recovering from
• Are easy to understand and highly visible (if I don’t understand it you are probably lying)
• Not have symptoms that make me feel revolted
• Have an element of winning/battling through (so I can give you motivating talks to make me feel comfortable)

These are deep seated sadly.

Having said that I don’t think there is any harm in spelling it out where we can for all illnesses that suffer this stigma.

 

Those are good points, I have one suggestion, but it could be a little controversial:

They could imagine themselves having the illness. I mean there was a big swing in the perception of HIV once the general public started realising it could happen to them too.

 

I’ve often thought that this should be one if the messages we could use more use of in advocacy ....fear in part is motivating the stigma so why not turn it to our advantage?. Of course they would need to know what to be afraid of first to dispel the “we all get tired” unhelpful beliefs they have.

With HIV at least everyone started off believing it was real. Perhaps having this “it affects everyone of all ages rich or poor” as a separate message theme alongside the broader awareness campaign?

 

That's the gist of it. It's a complete disaster. And those responsible know, they just don't care. Sabrina is Canadian, another good and accurate description of the disaster the psychosocial model created. Freaking ghouls.