The Concept of ME/CFS

Yes, thank you Jonathan and everyone contributing comments. Looks very useful.

I have made a few notes but before trying to properly word them will read through the discussion if already covered. Likely won't be able to do this before the end of next week.

 

ME/CFS is generally diagnosed after a delayed period, for mostly historical reasons. Traditionally it's been 6 months, far too long. 3 months looks more reasonable, looking at where the recovery curves are, the point at which recovery becomes the exception. LC has provided the best data we have on this.

Still, lots of people are ill with a very similar, if not mostly identical, illness that lasts a few weeks to a few months. PVFS seems to be the only concept that captures this, and it needs to be recognized because the best evidence we have (not widely acknowledged, I know) is that the most common way to prolong this illness into the ME/CFS delay is to exert too much. And it remains that being this ill, non-functional, for 3 months minus a day is a significantly disruptive illness, to the individual and to society, considering that most cases are of shorter duration.

Still, I don't see where there's any difference. A flu lasting 4 days isn't a different illness than one that lasts 8-10-15 days. It all just seems like trying to cram some original sin from a spiritual model into modern scientific theories to me.

 

That is what I am not sure about. I have had 'Long Covid' for about 2 months on two occasions. I was completely exhausted and had no sense of being able to do anything that involved exertion but at no time did I think I had the illness that members here describe. I had no OI, no sensitivity to light, no post-exertional crashing. I had bouts of nausea but mild. I had some of my usual stomach pains in the night but not more so.

A small number of people after Covid get roller-coaster crashes and have to lie in the dark, yes, but I don't think that is the same as what I had and what others I know describe.

'Mostly identical' doesn't cut it in useful diagnostic categories I think. Rheumatoid arthritis and seronegative inflammatory arthritis can be genuinely identical in clinical presentation but we have two syndromes because we had reason to think there were two different mechanisms and that turned out right. All the stuff we hear about illnesses having very similar symptoms is I think a false alley. It is the tiny clues that tell us which syndrome to go for very often. If a patient has one or two marks under the fingernails that look like oil drops they almost certainly have seronegative arthritis.

So I don't think the difference between ME/CFS and PVF is necessarily just going on longer. I also think that in a sense we may need to follow ME?CFS for a matter of at least weeks in order to see the ups and downs of PEM that make it that syndrome. You cannot tell that you have a grandfather clock that chimes the hour unless you wait for an hour to come around.

I wouldn't for a minute suggest that people without ups and downs can be given exercises. The thing about choosing which people to give exercises is to me nuts since nobody needs exercises when convalescing. It is, as far as I know, always best to go gently and do more when you feel really ready - and there is never a need to exercise to be able to do more. You just do the more things you want to do.

 

The tendency in the UK now, specially with glandular fever/mono, seems to be to regard this as part of the normal course of the original illness. I know a couple of people who developed it as mature adults, and from recollection both their GPs said similar things.

It seems reasonable enough with illnesses known to have a long recovery in a substantial minority of people. I had a close friend who developed glandular fever in her mid-50s, and it took almost a year to get back to normal. She was incredibly frustrated, but from a medical point of view it was probably still within the bounds of 'normal' for that virus.

That's still the big unknown, isn't it. It's easy to make that assumption, but people like me got ill back in a time when convalescence was still a thing, and it didn't affect the outcome.

[Minor edits for sense]

 

And a large majority of professional athletes continue doing sports whilst ill, for example with Covid-19. Perhaps there is a relationship, but if the effect was large wouldn't one would expect a much higher rate of athletes with ME/CFS or long-lasting Long-Covid?

 

Indeed!

There are people who experienced what used to be called PVFS (aka the long tail of some acute illnesses), then went on to be diagnosed with ME/CFS because they still hadn't recovered after a lengthy period.

There are also people who were diagnosed with ME/CFS, advised to do graded exercise, got worse, and never recovered the level of function they had beforehand.

They're different stories, and we can't assume the second group all had potentially recoverable PVFS that got converted into ME/CFS by inappropriate treatment or advice.

 

I agree in the sense of a weird angle that might be just anecdote based on assumption. Those who I know who have said they have PVFS have been very sure about it.

Far more sure than anyone (except maybe the ones who had the suddenly extraordinarily ill and bedbound for years from the start type) who has ended with an me/cfs was .

I think that’s down to the slightly less straightforward pattern and timing/type of symptoms in me/cfs in that over threshold can leave you feeling ‘in the zone’ running on adrenaline then (not immediately) later not knowing why you can’t wake up and force your brain awake to work to that deadline. Having unreasonable calf aches after driving for not a hugely long journey. Sometimes being able to push through. The growing aches that ‘could be something else’

it’s an illness that disorientated you because it isn’t that straightforward and I don’t know if it’s just extra symptoms or severity or the sensitivity to other things leading to delayed or cycles of that make links less obvious and cumulative.

ie me/cfs is NOT that simple. At best we might suspect post viral because we never got back to ourselves after ‘that virus’. But I struggle with ‘the gap’ and etiology questions not just because of how far back it is but because I had so many illness bouts and wonder whether the bad ones I remember were bad because of me/cfs already being there and not the other way around.

I keep thinking back (I’ve had a lot on) to think whether the difference in my athletic training was actually before I acknowledged it (not getting any fitter takes time to conclude) and before the big illness. It’s not like I hadn’t been ill whilst being a runner before and being used to that slow building back up to where your fitness was again. I sort of eventually gave it up and didn’t think too much of it (was never going to be that good) but it was then the other sports I just did fir pleasure/being part of team draining me that confused me. To the point I didn’t acknowledge it because I was definitely used to a bit of a run around ‘waking my brain up’ and I didn’t understand why that didn’t work. Or maybe the thing was sometimes it did at the time, other times when feeling awful then not and not looking out fir the specific connection of that and other obligations to what because I wasn’t allowed rest a lot of random struggles and accelerating decline.

I’m not so stupid I thought I still had tonsilitis or flu or glandular fever and was going to the gym etc to wake up brain because of that strange up and down when you are overdoing it (I assume that’s the reason as I know what I had on my plate and know what that does to me now)

getting a decent definition of me/cfs and stopping these behavioural/misthinking/wrong method staff at fatigue/pps clinics from focusing on fatigue and the least ill instead of the correct illness and those most ill is vital because of the insanity they cause by their gaslighting. It’s why we feel so deep down stripped of ourselves by someone determined to tell us it’s just like when they as healthy people get fatigue and behave themselves better - because we’d all done that calmly to realise we were ill. Hence why I want to get rid of the fatigue term.

And whilst I understand as I didn’t totally get/understand the PEM cycle like I do now (but did know I could be ‘more productive than some norms’ then flat on back ill) and when stuck in the plugging on the symptoms would have been very different to this ‘clarity’ I think having some ‘compromise version’ of this would cause more confusion vs thinking it could be useful if we perhaps might need to add a pre-diagnosed bit to quite a specific condition concept once eg someone can have two weeks off being left alone to fully rest (then watch the patterns as a test). And that aim of clarity of concept is vital to stop the huge harm of all this disorientation of patients themselves and others around them assuming other things.

I also think people as colleagues would spot someone with pvfs from spending a week with them but not me/cfs as they are totally different patterns and ‘ability to performing seal’ then collapse and it’s that enforced ‘hide your iceberg’ that crushes us. as it means we get no life first and we get worse. And the ‘take it slowly’ just doesn’t work.

sadly it is unbelievably swift deterioration in all the areas those professionals suggest are other mental health conditions (losing weight, sleep, cognitive) but very much aren’t these just a body being forced into unsuitable circumstances where they can’t meet the body’s needs because that’s what their programmes keep someone in ‘in the name of routine being more important than anything’ caused by their very very bad treatment or self help suggestions that are the diagnostic of me/cfs.

I don’t think pvfs works the same way and it’s not personality type that they ‘just don’t complete the first day as it’s too much’ vs the me/cfs person pushing through then it’s those having to do the later days in a now haywire body that makes for exponential vs pvfs impact. Because the pvfs stuff is understood /more run of mill with ‘normal expectations’ (a slowed down person) where the me/cfs sleeping through your alarm until 2pm on wed (and still then knowing you sound out if it) when you seemed good yesterday isn’t.

the clinics are trying to use their boom and bust bs to turn me/cfs people into pvfs people and then ‘just fatigue’ people (where as they pace-up and ‘manage their energy levels’ with a cup of coffee instead of radical rest based on conserving energy levels) is disastrous because they then just push the me/cfs buttons tgat the pwme went through doing and took six months to realise they lead to kidding yourself, hell trying to keep turning up as it goes on and then a big deterioration at six months where you get accused of ‘having something else’

so yes thinking about it I think they might well be different

 

My son and youngest daughter both had glandular fever at separate times .My son had PVFS .
My son was 16 and took around 18 months to recover. He did not get PEM , but had horrendous headaches ( lumbar puncture to try and work out why) and felt awful . Really tired and couldn't concentrate , but he could exercise a little and start to build up strength after around a year . His sleep shifted but was not unrefreshing.
We did use some supplements , and these did seem to make a difference - but he could have turned a corner anyway , we will never know .

My daughter was 15 . She also had H. Pylori shortly afterwards , so an altered microbiome.
Over the first two years she had a couple of spells where there were improvements , but these were short-lived and baseline lowered.
We have used supplements, some of which made a difference. Don't take many now.


Differences
She's competitive so pacing was difficult , especially as paediatrics follow Bath activity protocols . School was difficult " school refuser" label. She's also had food sensitivity issues since chickenpox aged 4
Autistic traits - masks very well so this has not been picked up by anyone other than siblings .

My son can be competitive , but has an innate fondness for energy conservation ( was a lazy teenager) 16 is adult services here, so no paediatrics, no requirement to provide education legally and left to own devices.

Hormonal differences especially in the chemical soup of puberty probably make a difference . I don't know if there are many teenage studies which look at this .

Neither had a bad case of glandular fever, so it wasn't a case of acute infection .

My aunt has severe ME, acquired in retirement, though she has had health issues throughout her life , so perhaps a genetic disposition is in play too.

 

I need to work on getting a message across to Patient Participation Group at my local GP for young people with ME and PEM and CEOs to start to get the message across of how to communicate from professional to professional (MDT even between profession to professionals it is hard work) advocate and patient. These are some of the hurdles and thoughts I have.

We need to bring back a conversation around convalescing.

A statement that in my experience helps is- PEM is an inability to produce energy on demand and or sustain energy needed. It seems to me to explain to all (laypeople and professionals) what actually happens?

The arguments I had with the hospital pleading (always in emails because I knew back then I needed the evidence) with them to give Angus time. They never did and it was unbearable because you have to do as you are told or have your child taken. I know this hampered Angus's recover and caused him distress and so much pain. However, I was the only one who witnessed this. A friend reasoned with me if they did take him in to hospital they would see for themselves how ill he would become. We have seen and heard recently that this is not the case. We cannot prove the damage to the body so it does not exist?

I didn't understand the political need for them to keep him active, when everything in his body shouted let me recover/convalesce. It was the failing point in our communication between doctor, advocate and patient and is still the barrier. The one of many sentences that show the PEM in the letters is "Angus is once again slumped against his mother" as though it was a bad thing rather than looking for it as possible indication of PEM.


I hear it all the time in the forums where mothers are trying to get their understanding around what they see and what they are told. The word deconditioning needs exploration, as this is the advice/reason given to most parents to keep their child active and at school.

In a way that is what you are looking for "You just do the more things you want to do" and then you look to see how the body responds to the "more".

I have just found the complaint that I wrote to the first hospital, I thought/ believed back then, that patient safety was at the heart of the NHS. I soon realised; a mother complaining to a hospital, is a dangerous for the child so was advised not to send it.

I was also aware that this could possibly be true, I had written in my complaint "The treatment that we received will have life long medical consequences for my son, me and my family" but I thought that with careful handling we would be able to work out of the mess we had been left in, after all children had a better chance of spontaneous recovery. I was mistaken as the next CFS provision was also of the mind over the body approach and offered us the Lightning Process.

Angus is now 19 and sadly with new incentives to get people back in education or work, we are being asked to engage with LA education department and so the threats will start again for us and many more young people. We need an urgent way of explaining PEM and the dangers of keeping people especially the young in a PEM state.

We know that Heart's twitter and book, a severe person who recovered and released a gardening book, a TED talk and Kirsty Young supporting the idea of braintraining there is undercurrent politically going on and your work Jo is going to be vital in us address this.

 

I think energy is unlikely to be the problem. There is no evidence for a problem with energy severe enough to explain the symptoms of ME/CFS. In general I think it is best not to try and mange people with ME/CFS on the basis of theories - of any sort. So far we don't seem to have a theory that makes much sense.

That said, my guess is that PEM is more likely similar to what we call reflex inhibition. If you by mistake touch a hot stove with a finger you will find that your arm jumps back from the stove before you feel any pain. The reason is well understood. The spinothalamic sensory nerves in the finger link directly to motor nerves that make muscles contract, within the spinal cord, and the reflex response takes less time than the passage of a signal up to the brain where it has to be integrated in several steps before it is actually felt.

The point being that unpleasant inputs prevent our bodies from using energy in a way that we have no control over. Moreover, learnt unpleasant outcomes like previous episodes of PEM get fed into the reflex programming. I cannot stand from squatting because the muscles refuse to contract. That is at one level driven by pain if they do contract but it is also driven by having learnt that if the contraction does manage to lift me up, on past occasions it has failed me half way through and thrown me onto a concrete path, resulting in lacerations taking weeks to heal. Our reflex nervous system takes good care of us in ways we know nothing about.

The problem I see for people with ME/CFS is that the reflex block is in response to something the nervous system cannot make any sense of, at any of many levels. The natural response of a system in that situation is to shut down more and more.

We forget that the way the nervous system protects itself isn't even necessarily in the brain. It is said that headless chicken can still run. The spinal cord can organise how we use our arms and legs to a great extent on its own. In fact if you damage the brain, as in the typical corticospinal tract damage that gives you a typical stroke gait, the problem is that the spinal cord contracts the muscles too much. They go in to spasm. The brain actually controls the puppet that is the body by letting go of individual strings rather than pulling on them. It is all very upside down from how we think we work.

In stroke care, around the 1970s it became understood that stimulating the paralysed side was counterproductive because it just increased spasm. Strength had to be taught not through exercises kneading tennis balls but exercises in letting loose, encouraging postures that eased the overstimulation. I wonder whether what is needed in ME/CFS is something rather similar. Pacing seems to be the right idea. But maybe we need to understand more about the specifics. Musicians spend hours retraining their hands to achieve perfect control by eradicating the bad habits that come from trying too hard.

 

That's interesting. Have you found it all right with doctors?

I mostly tend to talk about PEM as a consequence, rather than a cause or a separate thing. Not because I'd understood the problem with trying to explain the processes—I only learned that here, and even then it took a while to grasp quite how iffy it is—but because it's what happens.

It doesn't even feel like being unable to produce or sustain energy to me. It's like being knocked off my feet by a viral infection, then being wrung out and shaky for ages after. People sort of get that because they've experienced it, and they know trying to do things too soon after doesn't help. They're baffled about why happens after I did something really trivial, but then so am I.

I rarely describe how ill I feel, because I'm moderately affected and that's not the worst thing about it. It's how pestilentially frustrating it is, and how I never seem to get any less bloody exasperated by it.

 

Doesn't this beg the question of what caused the first PEM?

 

Pacing isn't therapeutic, it's preventative.

Our systems don't shut down. They scream bloody murder! PEM isn't a reflex learnt to avoid being burned, it's being burned and feeling that pain.

 

Given how much I’ve been able to overdo it in the past and the damage it has done I think it’s something to do with the recovery from exertions ‘process’ rather than signals of what to do or not to do being the main component of this


It’s a bit of getting in the weeds of the ‘but your legs don’t just switch off’ no but if you force into them during this pain then it also sets you back etc to unpick what’s what I think here.

 

That would be analogous to the more direct reflex effect with pain.

 

Yes, I took that as read. I guess the same applies to a large extent in the stroke case. The aim is to prevent a cycle of spasm. Whether you can find a way of providing a better opportunity to improve with a more specific approach would be the question. Some people do improve and if there is any way of maximising the chances of that then it must be worth investigating.

Well most others in the discussion seem to think systems do shut down - i.e. that using muscles becomes impossible. If it was just feeling pain then nobody would talk about lack of energy surely? My impression is that the mechanism is going to be multilayered - much as it is for my knees and most of these things.

 

If it's an unconscious reflex, why would it sometimes take a day for the energy to be "blocked", after plenty of damage can be done? In the pain example and the squatting example, the blocking is immediate.

Edit: I think I'm just having a hard time understanding the timeline of how this reflex learning progresses.

 

The problem is that the processes of muscle use involve chemical changes that will re-equilibrate within five minutes at most. A purely energy metabolic account just doesn't fit the time course of PEM. Delayed signals preventing re-use, in whatever way, could.

 

Yes, the relative unresponsiveness of muscles is part of it, as is the exhaustion. But so many of us have that "poisoned" sensation. That gets its volume twisted high. As does the acid feeling if you've that. As does the head pressure...etc. For some its different areas of pain. Point is, your entire cluster of symptoms gets thrust into high gear.

Compound that weirdness with the fact that it isn't necessarily a muscle thing that thrusts you into PEM. For many of us it can be just cognition, just too much focusing. I'm not sure your model accommodates all that.

 

I have a relevant anecdote to share on this.

After a 12 month period of bedbound with severe ME/CFS immediately on completing the NHS management course, I began to slowly increase activity (using 50% of energy envelope to the point where in the spring of 2013 I could spend 20 mins a day on a perching stool in the kitchen helping my late husband prepare the evening meal.

This particular day we were having a pasta dish and I was in charge of the easy bit; cooking the pasta. We were busy chatting about our day and my husband noted that I'd forgotten the pasta so he prompted me to give it stir. I stirred the pasta in the boiling water - with my hand.

My husband glanced across at me and leapt into action to withdraw my hand and shove it under a running cold water tap.

I hadn't noticed, and and still didn't realise what the panic was about, and no pain signals.

My brain seems to skip a signal or two when I am in PEM, rather like listening to someone talk on the phone when they have a bad signal. Whole sections of the conversation are missed completely such as "pick up the spoon to actually stir the pasta."