Degree of improvement in ME

Page 12 of the APPG report Rethinking ME states:

Is this true? If so, to what degree? And over what period? I'd be grateful if anyone could let me have the evidence.

There is no citation for this statement in the report. A previous sentence within the paragraph (stating that recovery is rare) cited a systematic review by Cairns and Hotopf who found a median proportion of 39% (range 8-63%) improved without intervention on follow up (and they recommend GET and CBT). Return to work ranged 8 to 30%. Put another way, a median of 61% (range 37-72%) showed no improvement and 70 to 92% could not return to work.

This paragraph seems contradictory.

 

Could they be referring to those with PVFS during onset? It can take 5-6 years on average for some pwME to stabilize, but PEM has always been severe in my case.

 

I actually got much better in my second and third year (it was a very slow process) and I thought I was one of those people who eventually either recover or at least stabilize at a more manageable level. I was 90% back to normal. I still had my symptoms but they were very very mild, so I could have a close to normal life. Then I started to get worse again the next year and never reached that level of relatively good health again. (I'm in year 7.) So I also wonder what the chances of that stabilization at a higher level are and whether there is actually data on this. Even though I had that huge improvement for a while, it is actually fluctuations I seem to experience.

 

We lack any decent natural history of ME or serious longitudinal studies over years or even decades, but anecdotally there is evidence for some people displaying this pattern, others following a relapsing and remitting course and others following a steady ongoing decline.

I suspect anyone claiming knowledge of a specific course for ME over time or even that any one pattern is experienced by a majority of people with ME is indulging in pure speculation.

(Added - My experience was an initial steady improvement of four plus years, then latter a sudden relapse followed by slower improvement in turn followed with various relapses (some sudden and others gradual) and lower levels of improvement over the last twenty years. Over the full thirty years of my ME there has been overall a steady deterioration despite periods of partial remission with a steady increase in the number of symptoms experienced.)

 

@Wyva

I hope at year 7 there is still a good chance for improvements for you again. I think the early years might be indicators that there is a chance of improvements for some pwME?

I was on the up and up after 3rd year too with small declines in between, by year 5.5 I felt 90% improved. I felt well enough to start exercising again but experienced severe delayed PEM, I continued to exercise assuming it would eventually go away on it own, but it didn't of course. Then I took immune modulators at year 11 and that changed my baseline and I developed OI.

 

Dr. David Bell

The third stage is characterized by mild, gradual improvement over years, and along with the patient’s adjustment to the symptoms; activity is regulated and improves. During this time, the patient looks well, and to casual observers, it seems that a recovery has taken place. Some patients will recover completely, usually between three and five years from the onset. Recovery and improvement are completely different. With recovery a person can push themselves with exercise without causing a relapse, and can stay out late at night without ill effects. Improvement is defined by the inability to do either of these and the constant worry about recurrence of the symptoms4.

 

Indeed. Which is why we need much better registers given there are lots who seem to want to claim there are loads who 'have CFS' of their definition as to why they keep their fatigue or PPS clinics open (on the ME/CFS dollar? - that question needs to be answered)

If someone hasn't been too fussy either about who they recruit and defining things, or whether they sub-group from there and then insists on averaging across everyone - particularly after high drop-out rates for a treatment which would filter out those most ill Krypton-factor style (but you'd only have to insist on regular trips with no benefit for those more severe wouldn't you), then you've got unbelievably manipulated 'results' that don't actually apply to the condition at all.

And this recovery data does need to be both accurate and more fine-grained by individual circumstances (severity, lenght of time, type and so on) - which I don't beleive that they can do if there wasn't a big old chapter about how they did that given there is no register or proper refining in the past by health services - because it has been fundamental to screwing the lives of many with ME getting basic rights on almost everything. And is used as the excuse to demonise those who don't improve often

Plus of course those who have the right 'situations' (no noise issues, not being overexerted continually) surely stand more of a fighting chance and such proper longitudinal censuses could have confirmed these needs etc.

 

thats my story too sadly

 

Me too - you might 'get over' another illness on top e.g. EBV, flu, tonsilitis on top of it or finally shake off a crash/relapse (the ones that come 6mnths after you've done stuff that in retrospect you kick yourself for as it seems obvious, but at the time you were thinking 'you were managing it vs ME/CFS limits' which is why I have such an issue with the treatment - even pacing - and descriptions by most who think they know about it, because you can 'managing to work at your limits' and think you've cracked functionality even thought it is impossibly hard to do but that's how you give yourself the worst downward spirals and their advice would unfortunately put many in that situaiton re: workplaces or partners) like a year or more on. But that wouldn't be back to where you were before - just you would find it difficult to remember where you were before anyway by that point.

I don't know how we find a way of helping people - as it only comes after maybe a decade, maybe 2 (depending on yourself and circumstance) of enough experience and experiences - to measure, even in themselves, the disease itself. Because at the moment it is like you'd need to measure acceleration/deceleration (someone used term 'ability to get fitter' which is close to one part of it) whereas currently everyone is reaching for at best measuring speed but mostly either just 'time' or 'distance' - it's something about the trajectory 6mnths, 12months, 18months and 24months on from doing certain things (ie recovery times in themselves) that would actually tell you if your body is better than it was.

Goodness knows what 'better' technically accurately is if you aren't using matched-pairs with e.g. people of equivalent abilities at school for cognitive and physical abilities? It would surely take a while to feel like your 'unimpeded life' was here to stay and not going to result in longer-term payback or you just being excited about feeling less than awful but still can't do x like you used to without spending the rest of the week in bed.

The quote by @Mij is part-way there but perhaps missing the possibility that you need to look at the longer/medium-term effects of doing these things cumulatively and whether 'getting away with something at the time as a one-off' is quite different to 'no longer having to think about it' like normal people etc. because e.g. if you did train slowly for a half-marathon or whatnot -however carefully and cleverly you thought you did it at the time - it wouldn't lead to your health being worse in 2yrs time.

 

Dumb question: what is PVFS?

 

Post Viral Fatigue, Post Viral Syndrome, Post Viral Fatigue Syndrome (PVFS).

 

This.
There are a number of small and relatively short-term studies using all manner of different diagnostic criteria and also all manner of different definitions of recovery. Unsurprisingly they've come up with vastly different results. We need much more rigorous and much more long-term studies. Alas, funding...

As someone with a relapsing-remitting course my recovery status would have differed greatly depending on when the question was asked. To illustrate, 3 years after initial onset, somewhat improved. 6 years after onset, much improved or 'recovered' (by some definitions, about 90%). 15 years after onset, worse. 18 years after initial onset, somewhat improved. 25 years after onset, much improved or 'recovered' (by some definitions). 40 years after onset, very much worse.

 

My daughter has got worse over the years.

Charles Shepherd often uses the "degree of improvement over time". I wonder if it may refer to many people who keep pushing themselves before they understand ME/get diagnosed. Then when or if they are advised to rest they may improve a bit. I know a few for whom this fits.

 

i think the statement is lifted from the MEA's leaflet on prognosis & permanency. It has refs at the end
TWITMAC-Prognosis-and-permanency.pdf (meassociation.org.uk)

 

Thanks, Shak8! Hope this is a good day for you--and for everyone here, recognizing that "good" is a qualified description for all of us.

 

Many thanks JemPD.