ME Association magazine summer 2019

There are parts of the article that I think should have been phrased more carefully, but I can find it difficult to know how critical to be of a piece like this, which is clearly intended as such a personal story. I feel like some people may be reading more into it than was intended, or is really fair. The politics around our condition means that there is a particular need for people to be taking a very careful approach to what they say, and it's understandable that other patients are sensitive to slip-ups when they could feed into social problems that are already bad enough. At the same time it does seem harsh on patients that we feel this need to hold one another to higher standards than other patients groups.

tbh my approach probably varies according to what sort of mood I'm in.

I thought I'd just add my thanks to @NeilH for joining the forum, and for all of his work over the years.

 

It might have been somewhat unfortunate to advise others how much activity they should do, based on merely personal experience. Especially if you have a prominent position in a large patient organisation. That said, I think it's important that people are able to speak openly about the idea that they might have done too little physical activity in the past. It might not be what other ME/CFS have experienced but the illness is heterogenous and I don't want the forum to suffer from confirmation bias.

I think it's quite common in the ME/CFS community (on Twitter or Facebook for example) to see patients advise other patients to rest more, to lessen the amount of activities or to do only a certain % of what they think they can do, all based on their own personal experience. In my view, that is little different from what Neil wrote in the ME association magazine.

I don't think we have reliable information about the longterm effects of physical activity in ME/CFS and where the right balance between doing too little (danger of deconditioning) and too much (danger of post-exertional relapses) is found. I suspect that for many severe patients it's quite obvious, as simple household tasks like showering or toileting is already above their energy limit. But for many other patients, I suspect it isn't that clear.

Thanks to @NeilH for joining the forum and this discussion.

 

Thank you @NeilH for posting more of your thoughts. And my condolences on the death of your sister. I'm so sorry that you can't go to her funeral.

I confess that it never occurred to me that any patient (with any chronic illness, not just ME!) would not even try to get out of bed (or try to sit up, or whatever was just beyond their ability) to see what level of activity was possible.

It's surprising to think that anyone would not try very hard to do at least some activity unless they were very depressed. Or unless they were given strict doctor's orders to stay in bed.

But I believe you when you say that you did not try to get out of bed very often for 7 years. And that you regret not trying.

This idea of a patient not trying very hard to get out of bed (let alone for 7 years) is something I don't remember ever reading about directly from an ME patient. So this is quite new for me and it's hard to get my head around this idea.

Especially since it is the opposite of my own personal experience (I've been sick since 1990) and the many experiences that I've read from others over the years.

As others have said we need more data. And I definitely agree with your last point - ME is devastating.

 

A well balanced view @Michiel Tack (as always) and another welcome to @NeilH for joining the forum.

 

Read the piece. Overall quite ok. It’s an anecdote and very personal, but principles seems familiar for many. I think many (most) patients in relative terms are doing exactly what Neil wants them to do. Then I do think there are very few patients thinking that total bedrest forever will cure ME. So that one is obviously not very well put. Sort of a unhelpful myth.

Not at all a fan of strict categorization, but let’s call the ones not able to move an inch, the very severe ones. On the positive side, they are not that many, but most certainly think there is a reason for not being able to move at all. When it comes to all others, the idea and implementation of of total bedrest will have to do with bad counseling. But the thing is that this sort of advice are 9/10 times not the case. As we know it is often the quite opposite way around - the way of pushing trough. Surely also bad counseling. From millions of experiences, we know that the sound advice and thing in between would be about pacing. And guess it’s fair to suggest that proper pacing may give the best chance of quality of life from day to day and the best chance of overall improvement.

What I find troublesome here is the “get up and go” and the “prize” of “accomplishing a thing”. Well, if it just was that easy. No one will oppose to the idea that doing things brings satisfaction. Of course it does. That’s a given. But it is something here about missing vital nuances and about timing. I understand that Neil, when reaching a level of his disease, knowing that prognosis may not improve, accepting the situation and finding a whole new way of life, can go down the path he describes. Because everything you knew is gone, and you have to adapt the hard way. Then there actually may be a sort of pay off when describing the car race even when living the harsh aftermath. But what’s ok for Neil may be dangerous to others, especially thinking that one should avoid that anyone gets to the level of disease where Nick and others are at.

What one ideally should emphasize here, is that doing the thing Neil did (driving and attending a car race or similar exertion) may not be for the ones “new”, the ones trying to stabilize, the ones actually having the probability of impacting on prognosis. One thing is handling the short crash from the example used or other things, that’s what patients do. But again, if it only was that “easy”. It’s the other crash here that is scary, the potentially long one, even more important another added big crash that shatters prognosis. Many of us know first hand that adding crashes at some point may be shutting the door of improvement more or less for good. So this is also very much about timing.

He obviously means well, but there is a desperate need for clarification and I do understand many of the reactions.

 

For this reason I 'liked' Neil's original post. Along with others, I have expressed my concern with his article but I very much appreciate Neil joining the forum and engaging with us.

 

So sorry @NeilH to read that your sister died last week in Australia. It's very hard to lose family members and so far away

 

“I gave my advice to rise from your bed and walk once the initial illness has passed. I still believe that”

Thank you for @NeilH for commenting on here. I too am very sorry for your loss and being unable to go to your sister’s funeral. This illness can take away so much.

May I ask are you saying you believe the bit you wrote I quoted above only in regards to your own experience or for everyone who is bedridden? The former is fine but if the latter I think to extrapolate your individual experience of one and apply it to all people with severe and very severe ME is not acceptable - and as Chairman of a large UK ME charity is particularly shocking. Personally I think it’s v disappointing you didn’t include a sentence acknowledging there are some people with ME who even after years are severe enough to not be able to be out of bed, however much they try to extend their limits.

As someone who has been bedridden for the last 6 years (ME for 21 years, moderate for the first 7 years so this is not my initial state) - apart from being able to move on to my chemical toilet at the end of my bed - I think if you think all those bedridden by severe ME eventually just need to gently push themselves to get out of bed, it shows you have no understanding for the people who are already at their limits and however much they try to extend their limits they simply do not have enough functioning to get out of bed without all their symptoms getting much worse and deteriorating into an even more severe state.

I really urge you to truly listen to those who are still bedridden by ME, some for many years, and hear how, unlike what happened to you after a few years, are not holding back and just physically do not have sufficient functioning at their level of illness to be able to slowly increase their activity to the level of being able to be out of bed for periods.

You claim that some people have followed an idea that they must just rest and remain in bed even if they could do a little more. It is not an idea I have seen mentioned by those who are bedridden or predominantly bedridden. I know I am bedridden as I simply don’t have enough functioning to to be out of bed. If there are such people that are behaving like this, I think they must be a tiny minority as the vast majority of people with this illness, at all levels, suffer from the opposite of not doing enough by too frequently exceeding their individual activity limits and exacerbating their symptoms further.

I find my activity levels automatically adjust when there is more energy available. During the few times in the last 6 years where I have experienced an increase in functioning within my bed, I have always naturally wanted to then try and transfer out of bed, but it has always caused such bad payback that I know it is sadly beyond my limits of functioning at this level of illness. However, I know I will want to try again to do it if I can feel I am improving. I am thankful that my level of functioning within my bed is still higher than the most severe - and that is nothing to do with anything I have done, I am just fortunate the illness hasn’t progressed as severe as it can to others. However, if I massively overdo activity within my bed I deteriorate even further and there is a risk one day it will not only be temporary but for long term. Sorry dictating this to my carer so can’t respond any further.

Edited for clarity.

 

I am severe as cant sit upright or stand still but still able to nip to the loo, to microwave to heat drink, (then come back to bed, rest, then retrieve drink) and to armchair with feet up by PC though cant stay there for long as less comfy than bed.

Before I got mini iPad I moved the few steps from bed to pc armchair more often but after ipad in bed I realised I was not moving as much as you can get engrossed in iPad so had to make a conscious decision to make sure I did, within my limits.

 

Hi @NeilH, thank you for joining the forum and welcome .

I accept that your article was a personal account, and I agree with a lot of the very good points you make, about pacing, acceptance of your new life, and avoiding quackery and nonsense. I have read the whole article and don't mean to quote selectively, if I quote it is just to show where I was up to when a point occured that I wanted to comment on.

Please excuse the tone if I get a bit ranty, it's just how I write when I'm on one of my hobby horses, I write this post in the spirit you expressed in the last paragraph of your post - An interchange of views, sometimes critical but often constructive, that help us understand one another and make some progress in understanding ME.

And from your post:

I don't quite understand why you believe that you should have tried harder to follow your GP's advice again when it had caused you so much harm in the first place. I spent the first 9 months of ME resting until I felt a little better, then trying to build up slowly, again and again, every time I ended up worse off than before, until I learnt that trying to do things longer and more often, whilst intuitive and a good strategy for recovering from many illnesses, only had a negative effect with ME. I have heard from many fellow sufferers that they wish they had cut back on their activities sooner instead of trying to get back to normal, and who believe that they suffered permanent worsening as a result.

If I don't have to get out of bed (ie if I don't have to go to work, I work about 15 hours a week), then I don't get out of bed. I have learnt to trust how I feel. I would never "try harder" to get out of bed, because if my body is telling me to rest and I have the opportunity to, I have learnt to take that opportunity every time. Trying harder has always led to me being less functional for longer, and resting whenever I can if I need to usually results in me being as active as I can be overall.

Nothing is worth going downhill for 4 days to me, I don't think I would ever choose to do that unless in very exceptional circumstances, certainly not for a free-time activity.

I have never met anyone with ME who believes that.

If it is "no matter" that you fail to get through the day and are back in bed by 10am, why is it not "no matter" for you to stay in bed for longer and not wash and dress if you don't have to? You might feel better for it and be more functional for longer later in the day.

A couple of years before I got ME, in my late 40s, I went on a cycling trip from Germany to England with 2 of my sons. On the first day of the trip I fell off and broke my wrist. I then cycled another 1500 km one-handed over the next 17 days (I told myself that I didn't want to let my boys down, but it's probably just because I was being a complete nutter). The point is, I know about trying hard, not giving up, pushing through, and all that jazz. I think most ME sufferers do, because before they had ME they had busy, successful lives, and for those who never got to really start their life before ME, the fact that they have endured so much makes every one of them heroes. So are Samuel Beckett quotes really necessary? I think we all know about trying, failing, persevering etc already.

I have tried so hard to manage this illness that Samuel Beckett would be proud of me, but I wonder if I have been trying different things to you? I have tried to resist the impulse to do more and to resist attempting to do things for longer and more often, to resist false hope and expectations, and to learn to listen to my body and accept what it is telling me.

Or you can do both, or neither, or do something else entirely. I have got bitter and better, and attribute my improvement to steadfast grumpiness.

I like to think I was on track towards becoming a better person without ME. I was doing voluntary work instead of lying on the sofa with a headache. I'm not really into the silver lining thing, but that'll be my steadfast grumpiness kicking in. I haven't allowed ME to tear me down, but it might do, I've no idea how I'd cope if I was a lot worse or if I didn't have the support that I do. ME has torn some people down, and I would never say that they "allowed" it to.

Hmm. As far as I'm aware the universe is a cold dark place where random shit happens and we can't do much about nearly all of it, although we might try deluding ourselves that we have more control / choice than we really do, just to make everything seem a bit less scary. I agree that this is a highly personal view and one not shared by all.

I do actually get the point about a minimum level of activity. Charles Shepherd has mentioned it often. It never really resonated with me until recently. I have had ME for nearly 6 years, but over the last two years I have improved substantially (in comparison to before, but I'm still nowhere near "normal"). Recently it has become true for me that if I sit/lie on the sofa all day I feel worse than if I go to work or go for a walk in the afternoon. But this has only started to apply to me recently because I have improved. It didn't apply to me before, and I don't think it applies to the majority of ME sufferers who are worse off than me.

Today I went for a 1-hour walk. It was the first time I've done that for a very long time. But there was no element of trying harder, encouraging myself or anything like that. If I hadn't felt like going I simply wouldn't have gone. In fact I would have flatly refused. I was following my improvement, testing my new limits, but only after observing my recent improvement for a few weeks. It wasn't something to aim for or a goal I set, I improved first, then I went for a walk. If I had gone for a walk first in the hope it would lead to improvement, I'm pretty sure it would have had the opposite effect.

 

Some of my thoughts in response to the article have already been elucidated, but my main worry is for children and young people being looked after by families – and doctors – who don't know much about severe ME. We have to remember that sick children can't advocate well for themselves, and that they will often try hard to follow adults' healthcare advice because they expect them to know best.

This means that we all have a responsibility not to mislead families who haven't realised yet that doctors don't have all the answers, and that their advice can be devastatingly wrong. Who, in the middle of trying to care for a very sick child whilst also keeping the rest of their lives afloat, may not yet have developed the skills to separate an article about personal experience from one about best practice.

Of course, we also all have the right to our opinions. Perhaps as much as anything else, this is a reminder that in the context of a specialist national charity to which new, inexperienced patients are looking every day, editors should be looking closely at articles before they're published and considering whether annotations or clarifications would be useful.

 

This is an important discussion which exposes a great deal of what I see problematic in the ME community. We need the narratives about ME to accurately reflect the science we now know about the disease.

@NeilH - So sorry to hear about your sister and this must be a very difficult time for you and I'm sure this kind of attention to something you felt was done to help the community must be especially difficult at this time.

I think it is likely you became a lightning rod for a simmering of discontent I see going through the community as the hope for a better narrative is fading as the IOM report has not lived up to what so many hoped it could accomplish of patients getting better care on the front lines.

In my opinion, if we are going to improve the long standing narrative that this is a false illness belief disease into the reality of this being a seriously debilitating neurological, immunological, and cardiac impairing disease we MUST stop using terminology that feeds into the belief narrative.

Many of the problematic statements from the article mentioned in this thread seem to me to reflect that "belief" system narrative.

The current disease description is inadequate for the severe ME patient population. The information that is predominant at this time is the narrative from the CDC based on the IOM report and IMO this article reflects the narrative that this is a fatigue based illness and that fatigue needs to be overcome by gradually increasing activity no matter how we feel.

While I appreciate that Neil may not have intended to portray a narrative that would undermine the reality of ME, it seems clear from this (and the multitude of other discussions I have seen about this) that people feel this does undermine the reality of the seriousness of this biological disease.

The "try again" narrative implies that we just aren't trying hard enough.

I think we now know the following:

1. The energy production system is impaired
2. The oxygen exchange system is malfunctioning
3. We don't have enough blood volume or healthy RBC to maintain muscle or brain function
4. These malfunctions lead to a cascade of debilitating symptoms that are exacerbated by activity outside our envelope.
5. That "envelope" varies person to person as well as hour to hour for each individual - so any blanket recommendation of activity is inappropriate.
6. Exacerbating symptoms includes harm to the central nervous system, immune system, brain, and heart.
7. We desperately need treatments that repair or at least improve these broken systems as well as better monitoring of the deterioration of the CNS, brain, heart and immune system.

Where in this narrative do we hear the dangers of what could happen by repeating trying and failing? Dr. Montoya discussed the damage to the central nervous system (possibly permanent) by continued push/crash.

We desperately need the narrative to properly reflect the seriousness of this disease if we are going to attract researchers and doctors. If they all view this as a disease whose treatment is all based on behavior modification then we can't expect to ever get out from under the psychiatric model of care.

 

Do you remember where he talked about this?

 

Dr. Montoya treatment sheet: Includes information about dangers of exercise, lab testing and antivirals.
From the paper: “Imagine that every time you crash, your immune system overreacts as a response…. As a result, the immune system attacks your body’s own cells in the Central Nervous System (CNS). Once these cells are damaged they may never recover.“
https://med.stanford.edu/content/dam/sm/chronicfatigue/documents/patient_care/managing_health/InstructionsforCFSPatients_20131004.pdf

 

This

 

But is there any good evidence that this is what's happening in CFS?

re "We need the narratives about ME to accurately reflect the science we now know about the disease." - I agree with that, but when so much of the evidence is weak or contradictory it largely involves meaning we have to try to be clear about how much uncertainty there is.

 

I'm concerned that answering your question is actually stepping into a minefield. So let me approach the answer this way. I will respect that you may not agree with my POV.

1. CFS and ME are not the same disease.

2. While I am aware that there is more than one criteria that uses the label ME - for the depth of science I refer back to the ICC and IC Primer.

3. I agree that there is very little evidence this CNS damage is an issue for those who only fit a CFS diagnosis

4. ME as per the ICC has information specifically about the CNS, so I believe it is reasonable to conclude that the ME patient group does have significant CNS involvement.

5. The ME patient population the ICC refers to is a select group of patients which means that making any blanket statement about whether this is happening in "CFS" inappropriate.

I would posit that the first scientific step in any disease is for the clinicians who have the most experience in the disease to come to a consensus about what the patient population looks like and what findings they as a group have seen independently.

I think the IC Primer is a valuable scientific resource that is too often overlooked. The clinicians not only came to consensus but included back up science for their assertions (see cited studies in the back).

While the statement made by Dr. Montoya is not specifically addressed in the primer, I consider his observations with his patient population viable for reasonable consideration and as the consequences for ignoring that information could lead to a lifetime of suffering, erring on the side of caution for the patient population who are known to have CNS involvement seems prudent.

I don't think it is a stretch of scientific information we already know about ME, to conclude that repeated pushing and crashing can lead to permanent deterioration of function.

Here is the link to the IC Primer - A search in this document using CNS and Central will bring you to specific information. https://d3n8a8pro7vhmx.cloudfront.n...national_Consensus_Primer_2012.pdf?1554817421

 

I agree that we need the narratives about ME to accurately reflect the science. If we actually do this then almost all the narratives that circulate fall apart. The narratives that purport to explain what ME or CFS really are, what they are caused by, and how they can treated.

 

what follows is a primal
scream expressing despair at the /state/ of our community
and our charities [not the writer or any forum
members or any members of the m.e. community].

and four things that i think we can do to jump out of that state to make progress.


a personal opinion that exorcism will fix you could also be
published, and it would be just a personal opinion, and i
think it would do less harm, because it would be at least
different from society's grasp of the disease.

that's not hyperbole. exorcism would more likely be
dismissed as loopy than pep talks.

what i have seen is depressing to be shown in a charity at
all. this is regress.


a few years ago, our community reached a new stage, moyer 2,
and can move forward into big things. we need to or we will
all -- all of us -- die before we get human rights as a
population.

we are all in the same boat politically even if we have
separate diseases, and even with misdiagnosed
diseases.

it feels like we are slipping back. we can see
this in fear of boldness, in skirmishy resurrection of
infights we thought were dead, in thinking small, and in a
general mood of depression. this is dangerous.


there are things we can do.

first, we can move characterization from tweaks to symptoms into emphasizing that it's a disease. a serious one. just like hiv/aids, ms, and sle, which are also ordinary serious diseases. [eta: i do not mean mea tagline or anything like that here. see link.]

the entire experience of the disease
does not match its typical characterization.

please note that i did not say definition. i said
characterization. they are not the same. [eta: i need to link to my recent post and externally on this here.]


we try jumping out of this local minimum, and end up right
back in it. OF COURSE we do. it's all the same thing to
our audiences. our jumps are too tiny.

we are not conveying the point that it is an entire disease,
but instead confusingly focusing on a few symptoms that
do not convey in the slightest what the disease is
/capable/ of doing to its victims.


second, we need to convey our outrageously compelling history.
want narrative? we got narrative! we fight establishments.


third, we need BIG things to move forward. small faithful
steps is the bread and butter. but /aiming/
to big things and less fear.


it feels like we are still getting some of our charities
on board with the basics of the basics, just like in
the many long years before we got a tiny bit of traction in one spot....

... which is slipping, partly because some of our charities seem to lack
ambition, determination, willingness to listen,
and a clear sense of where we need to get to.

when they are not going off in fashionably unproductive directions, they
are reinforcing mischaracterizations.


alem? individual. wilshire et al.? mostly individuals. meaction
at least provides a framework for individuals to pitch in.
the us's mass. assoc. also. and more.

but charities, oh !@#$ the disclaimers. i really don't
think a lot of our major charities are where they need to be.


i don't have it in me to do disclaimers.
this would not get written if i tried.


fourth and finally, we -- and charities -- can take [legal / regulatory / traditional media articles / blog comment] action EVEN IF seemingly unhinged imbeciles could try to use us FIGHTING BACK as a tiny part of an enormous attack on us [that would occur anyway].

take the hill! i forgive those who get cherry picked for speaking logic strategically. fight that with more logic.

[eta: i do not mean social media here. i mean legal / regulatory and more.]

fighting back is a POSITIVE! we are lying on the ground and
refusing to get up. we are that boxer who started crying.
understandable as both mass human rights violations and
boxing are brutal. but not strategically useful.

what perpetrators fear is us gaining power. our democratic rights are plenty powerful. we can and should use them! [eta: i do not mean social media here, especially not twitter. i mean legal / regulatory / various official and semi-official channels, trad media, and maybe blogs.

[i am not going to comment here about social media or meaction's no-oxygen tactic [which idk enough about] as it's too much of a distraction here.]


maybe i should stop there. but here is a picked cherry. again my concern is the state of our charities. not the writer.

> With a chronic illness you can either get bitter or you
> can get better.

no doubt it was not meant like this, but this /sounds like/:
"if you don't master your m.e., it will master you. sophia
failed to master her m.e. emily collingridge, who started
out mild, failed to master her m.e. casey fero at age 6
failed to master m.e. if only they had gone to the retreat
in india the beatles went to. "

what things /sound like/ does matter in a major charity,
even if not meant.


i can forgive mistakes by charities that do good. i have done so many
times.

but i think we need to get out of this particular local minimum
by the time mcevedy and beard roll around. [eta: if you read that as sardonicism you would not be wrong.]


eta:

local minimum means, like, imagine you are in a landscape with peaks and valleys. you want to find a low point (say, to get to a river that will take you to civilization). so you go down. but you are in a high valley. meandering around will get you noplace.

tiny tweaks, which ignore the big picture, allow audiences to roll you back down to the high valley. no audience will have the imagination to know that there is a big picture, because you do not tell them. they do not notice your tiny jumps.