"Young people have a better chance of recovery", how much do we know about this?

[Hutan]

Dr Kathy Rowe of Melbourne Australia is one of the more sensible paediatricians specialising in ME/CFS. She has published a paper on the long term followup of some 800 patients referred to the Royal Children's Hospital in Melbourne. There were 570 respondents to her followup questionnaire.

Speaking from experience, you don't get seen at the RCH after feeling a bit tired for a few weeks. Most children that are seen probably have had problems for at least a year by the time they and their families have jumped through the hoops of tests and referrals to other specialists. Our experience was that the RCH fatigue clinic didn't do any exclusionary testing once you got there though - so the sample may not be a pure ME/CFS sample.

I can't find the actual paper. There is a powerpoint for a presentation Kathy gave but I can't make the link work. Typing in 'Kathy Rowe CFS prognosis recovery' into Google brought up the powerpoint for me.

The issue of longer term outlook/recovery, is addressed from slide 38 onwards.

Kathy reports that:

• Five years after attending the clinic ~50% have recovered
• Over 70% of all followed for more than 12 years (n=93) scored 8 to10 on a self-assessed wellness scale
• 30% of the respondents considered they no longer suffered from CFS (many who rated themselves as recovered were still careful with their activity levels)
• Only about 5% weren't working or studying at least part-time

It's not possible to evaluate things from the powerpoint, but if you are interested in adolescent prognosis, it's worth a look. Even better would be to find the paper it is based on.

Of course there will be some bias in who responded to the questionnaire.

Even this sympathetic paediatrician is guilty of the 'correlation not causation' problem, stating for example:
'Continuing engagement in education was identified as the best predictor of functional outcome' suggesting school attendance brought a whole lot of benefits.

 

[user9876]

Even this sympathetic paediatrician is guilty of the 'correlation not causation' problem, stating for example:
'Continuing engagement in education was identified as the best predictor of functional outcome' suggesting school attendance brought a whole lot of benefits.

It could just be a measure of severity. So those able to attend school are less severe and this is a predictor of outcome?

 

[Hutan]

It could just be a measure of severity. So those able to attend school are less severe and this is a predictor of outcome?

I don't think that 'engagement with education' is just being seen as an easy proxy for illness severity here. Rather it seems to be seen as bringing benefits that make later wellness more likely.

e.g. Slide 52

KEY PREDICTOR OF OUTCOMES
Continuing engagement in education was identified as the best predictor of functional outcome

Met needs:
– social
–educational
–developmental
–life aspirations
–assisted physical activity
–ensured that could potentially support themselves

The powerpoint calls for efforts to be made by schools and others to be flexible, to allow young people with ME to be educated and gain qualifications (and, implicitly, get these other benefits) even when they can't study full time at school. Of course arguing for flexible education services is really commendable and needed. And for sure, education is important.

But I think this powerpoint would have many assuming that not only is engagement with (formal) education the best predictor of later well-being, it is also an important determinant of recovery. That assumption can result in pressure being applied on the young person to resume schooling. If they are too sick to study, that creates stress for everyone and can result in a deterioration of health.

(Okay, my brain is not working. I'll stop now and just hope it makes sense.)

 

[Snow Leopard]

That assumption can result in pressure being applied on the young person to resume schooling. If they are too sick to study, that creates stress for everyone and can result in a deterioration of health.

That's the point which user9876 was implying...

Coincidentally, I had a conversation with my mother recently about this and dropping out of school actually improved my wellbeing and mood - trying to stay in school, when I obviously cannot keep up was very damaging to my wellbeing. This was despite having understanding and very accommodating (rule-bending) teachers.

edit - corrected spelling of 'school', slip of the finger, or something else LOL?

 

[2kidswithME]

@lemonworld my mother took my brother out of school - against the wishes of school etc so he had lots of rest until he was actually well enough to return.

That's pretty much what I did, my middle one was out of school for nearly three years, and then eased back in very slowly.(He had other provision to cover basic subjects during those years.) This 'take it slowly' approach didn't go down well with the school, and we came close to them taking legal action for his 'attendance issues'.

 

[Jonathan Edwards]

Well, you have a point, at least when it comes to untreated infections or 'pathogens' perhaps. But I've never heard of anyone fully recovering from untreated chronic conditions.

People recover from chronic conditions quite a lot. A not insignificant proportion of people with rheumatoid arthritis go into remission without treatment. A few go into permanent and complete remission. Permanent and complete remission from multiple sclerosis is not rare. Chronic childhood asthma may remit. Childhood inflammatory arthritis often remits. Chronic back pain quite often remits. Etc.

 

[dannybex]

Good points @Jonathan Edwards -- wasn't thinking of the conditions you mentioned, although I've only heard of a few remissions from MS. Thanks.

 

[Jonathan Edwards]

I feel like I quite often see it mentioned here that young people have a good chance of recovering from ME. This is a phrase I often hear from people that aren't aware of how severe and chronic ME usually is, but I'm surprised to see it mentioned here as well.

Is there much proof to these statements? And if there is, how much of a bigger chance are we talking? Has there been done many studies on this?

I don't think saying this has anything to do with awareness of ME. Nigel Speight says it and it would be hard to find a doctor more attuned to ME. I have heard it from paediatricians at Great Ormond Street and elsewhere. It is not something spun by the BPS crowd. The literature is hard to interpret but consistently suggests that whereas recovery in adults is probably 10% or less the figure for teenage onset is much higher.

There is, paradoxically, a problem with data from referral centres that might do research. They will get selected cases. Reviews may be biased to overestimate recovery or otherwise. What is really needed is a population study of totally unselected cases. Ironically, the nearest one might get to that is simply a head count of the people one knows purely socially rather than through the medical system. I know, through social contact, of four people who developed ME/CFS during teenage years - and these are people who became bed bound for many moths at least. Two are now leading fulfilling and productive lives even if they are still nothing like their pre-illness level of activity. The other two I know less about progress so don't know. For me the take home message is that although anecdotal, my experience suggest that it is pretty likely that at least half of people who get ME as teenagers do OK. There may be a risk of relapse later, but these two have been doing well for several years. Four is a small number, but the chance of two doing well if the overall percentage is 10% is actually pretty small.

This is just the sort of thing that people like Luis Nacul and Eliana Lacerda at the London School of Hygeine with the Biobank are so important for. They have done the best epidemiology in ME there is and the Biobank cohort can take things further, with blood samples to work on as well. The cohort is as near population based as you can get, unlike another recent proposal.

 

[BurnA]

Two are now leading fulfilling and productive lives even if they are still nothing like their pre-illness level of activity. The other two I know less about progress so don't know. For me the take home message is that although anecdotal, my experience suggest that it is pretty likely that at least half of people who get ME as teenagers do OK.

I think is slightly misleading. Doing "OK" is one thing and it is relative to the context.
"nothing like previous levels of activity" is another thing, and implies there is something still very much wrong with these people. Therefore I would be slow to classify these as recovered.

Going from bedboubd to leading a relative normal level of life is of course a dramatic improvement I do want to recognise that, but, nothing like previous level of activity, is still a handicap and therefore not a recovery in my book.

 

[Jonathan Edwards]

Going from bedboubd to leading a relative normal level of life is of course a dramatic improvement I do want to recognise that, but, nothing like previous level of activity, is still a handicap and therefore not a recovery in my book.

You are right, at least technically speaking. I was not implying recovery in the complete sense.

However, I spent my life looking after people who had disabling illnesses and I learnt to think of disability rather differently. By the end we had means to abolish ongoing inflammatory disease, so people did not feel ill. But many had residual disability - fixed stiffness of the hand joints or elbows that did not straighten, or feet that needed special shoes. However, I was often very surprised how little these things altered quality of life. One of my patients was in a hurry to get her hip replaced so that she could go dancing again. Dancing for her consisted of very little other than her husband half-carrying her slowly round the dance floor in time to the music but they had a whale of a time. In fact I think they were enjoying themselves more than anyone else. When I first went in to medicine quite a high proportion of people carried with them the handicap of old illnesses - rheumatic heart disease, childhood pneumonia, club foot, mastoiditis etc etc. They had physical limitations but for most quality of life was not really any worse than the others. My wife and I have lived for forty years with the after effects of the major surgery she had to have just after we were married. Things have been hard at times but we have had a good life. So I have grown used to the idea that complete reversal of disease was not necessarily what mattered.

That said, if ongoing illness makes it impossible to socialise, do a job you want to do or whatever matters to you that is obviously no good.

So for me the important point is that it looks pretty certain that a significant proportion of people who get ME in their teens end up improving a lot and living fulfilling lives. I do not want to paint an overoptimistic picture but sometimes I get the impression that people on PR are being over pessimistic. There is absolutely no reason why a physical illness should not remit spontaneously to allow a satisfying life and it seems as if this is not rare for young people with ME.

 

[Effi]

Going from bedboubd to leading a relative normal level of life is of course a dramatic improvement I do want to recognise that, but, nothing like previous level of activity, is still a handicap and therefore not a recovery in my book.

This is where the BPS crowd always comes in and says that expecting your activity levels to ever be like they were before is not a realistic goal in the first place. With this belief in mind, they can easily spin 'better' into 'recovered'. (I know this thread is not about the BPS view in particular, but I think their mantra might influence what is being believed/said in general about recovery.)

 

[Snow Leopard]

That said, if ongoing illness makes it impossible to socialise, do a job you want to do or whatever matters to you that is obviously no good.

Yes, the burden of disease of such illnesses is much more severe - which makes you (me) wonder why there is so little medical attention for CFS and ME over the years? Why are less severe illnesses taken much more seriously.

 

[IThinkImTurningJapanese]

I do not want to paint an overoptimistic picture but sometimes I get the impression that people on PR are being over pessimistic. There is absolutely no reason why a physical illness should not remit spontaneously to allow a satisfying life and it seems as if this is not rare for young people with ME.

Because we are not getting well, no matter what the effort. And "Type A's" are damn good at effort.

As to there being,

no reason why a physical illness should not remit spontaneously

Come on, are you underestimating ME/CFS?

 

[user9876]

A not insignificant proportion of people with rheumatoid arthritis go into remission without treatment.

Do you know why this happens? Do the auto-antibodies you measure as part of a diagnosis also go?

 

[Jonathan Edwards]

Do you know why this happens? Do the auto-antibodies you measure as part of a diagnosis also go?

The autoantibodies may or may not disappear. However, I think we have reasonable idea why remissions occur and why the autoantibody levels we measure sometimes go down and sometimes not.Th idea is that autoantibodies are produced when negative feedback signals instead engage a positive feedback loop. Those signals are the antibodies themselves and must depend on several different types co-operating because those are the rules of B cell growth signals. That means that over time one expects some clones to fade out and others to fade in while keeping the loop going (clones probably have a limited lifespan). So it would not be surprising if with clonal turnover the positive loop ended up re-engaging a negative loop. Like most bugs in computers, autoimmune diseases do not that often right themselves, but sometimes they do.

The fact that sometimes rheumatoid factors disappear and sometimes not is expected because we know that some rheumatoid factors are involved in causing symptoms but others are just part of the feedback loop in the background. If clones that cause symptoms wind out of the loop you can still have rheumatoid factors keeping themselves going without symptoms.

 

[Jonathan Edwards]

Because we are not getting well, no matter what the effort. And "Type A's" are damn good at effort.

As to there being,

Come on, are you underestimating ME/CFS?

Clearly some people are not getting well, but that does not mean that others may not be well and have left PR. I don't see what effort has to do with it since we are all agreed that effort is not going to make ME better, any more than arthritis or MS.

I am no way underestimating ME/CFS. I am pointing out that physical diseases commonly go into remission on their own. So the suggestion that people with ME/CFS who get better without any treatment never had ME/CFS seems to me to be unreasonable. If ME/CFS is anything like an autoimmune disease there is every reason to think it could suddenly vanish.

 

[IThinkImTurningJapanese]

If ME/CFS is anything like an autoimmune disease there is every reason to think it could suddenly vanish.

And the experience of hundreds of thousands of patients, desperate to regain their livelihoods, along with...well, several Doctors trying to no avail, to do something, anything of assistance, would suggest that it is silly to opine that this illness would simply, "suddenly vanish".

 

[lansbergen]

but sometimes I get the impression that people on PR are being over pessimistic.

I am realistic. Not pessimistic.

 

[Sushi]

Clearly some people are not getting well, but that does not mean that others may not be well and have left PR.

Aside from what we see as far as PR members "disappearing" (maybe because they are well?), I personally have known about 50 ME/CFS members for many years--not a one has gotten well.

 

[Snow Leopard]

Aside from what we see as far as PR members "disappearing" (maybe because they are well?), I personally have known about 50 ME/CFS members for many years--not a one has gotten well.

I've know a few younger people who have gotten well over time, usually after explicit treatment (eg antivirals for EBV).
Overall it's about 5% or less that I've known who have had remission though (across all ages).