Radical rest: evidence and anecdotes

Shadrach Loom

Shadrach Loom

Senior Member (Voting Rights)
I’m sure there is a thread for this already, but I can’t find it. I’m starting this one because I’m on the point of giving up a lucrative part-time job which I really enjoy, so that I can try complete inactivity, and also because of the excellent point made by @Peter Trewhitt in another thread: we have a paucity of research into the benefits of rest, despite this being a fundamental component of pacing.

So, I guess, the more anecdotal evidence that can be collated, the better. The only person I know IRL who made a complete recovery from ME is my sister-in-law, who did absolutely nothing bar the occasional swim for a year or so (house in SE Asia with staff and a pool), which took her from mild/moderate to asymptomatic, and she’s been effectively ME-free for 25 years. I wouldn’t take an expensive supplement just because of an n=1 like that, though.

It would be very useful to know what duration of rest is typical before seeing benefits, and whether there is any way to quantify and strategise the required degree of energy minimisation, in comparison with previous cognitive or physical activity levels.

I’m spinning my plan to colleagues as a “six month sabbatical” because that feels like the minimum period before I might see enough positive change to consider working again - although that’s simply a guess. I have a very supportive spouse, so can consider levels of inactivity beyond the reach of pwME who live independently, although I’m already housebound with extremely limited mobility. Any advice would be very welcome!

I’m still sure that I have missed an existing thread on rest.
 
I have been living under “radical rest” conditions which I was forced to start in 2015 after I had deteriorated badly following a 2 day cpet. I hoped the same, that I would start to improve. I didn’t. I had already been ill two years, and the cpet tipped me over into severe. At that point, it was too late.

However I think it’s important for everyone to try. There is a thread on this forum about people who are very severe and severe going into care in a Norway home for ME patients, and recovering some function while being able to rest so fully.

As far as quantifying, there is the new app Visible for tracking activity. And Fitbit tracking of steps, HRV and HR useful.
https://www.s4me.info/threads/monitoring-app-visible-a-platform-designed-for-any-invisible-illness-that-benefits-from-resting-and-pacing-including-me-cfs-long-covid.23542/
 
I agree with you on Visible. It hasn't given me useful info so far, and the symptom tracking is too limited.
I do find my Fitbit helpful.
I have seen anecdotes about radical resting, sometimes called aggressive rest therapy. I could share minor anecdotes but don't have evidence.
Good luck with it.
 
John Mac said:
There is this post from yesterday, Post No 52

https://www.s4me.info/threads/long-covid-in-the-media-and-social-media-2023.31490/page-3#post-457087
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It’s not an objectionable article at all, but the conflation of radical rest and pacing means that it’s not quite addressing the kind of activity reduction that moderate ME folk would envisage.

There’s an embedded tweet from a perfectly well-meaning clinician:



Talk of “losing a few workouts” raises something of a hollow laugh when what one plans to give up is occasional phone conversations, emails, and laborious trips all the way downstairs.
 
I did it when I retired from full-time work. Not in the hope of recovery, but of recovering more function.

It worked, but as with previous recoveries from parlous states, it would not be hurried. It took 18 months to begin thinking about work again, and it was two years before I was as recovered to my previous level. Additional rest didn't add any more function, and never does.

This chimed with previous major crashes in the 23 years before I was diagnosed. It seems that if I push myself too far over a long period, that's how long I've got to wait before I see consistent improvements that aren't set back by relatively minor infringements. I imagine this isn't terribly generalisable, though, it's more likely a rough principle ("it takes as long as it takes") that varies individually.

The good news is that I always have recovered to my previous level of function. This has been the case whether it was a huge, long lasting crash; a less severe one that nevertheless needed several months' sick leave; or a single mishap such as coming back exhausted from a holiday, getting stuck on a motorway for hours, and ending up in complete non-functional meltdown.

And it isn't necessarily radical rest as some might understand it, as that doesn't work for me. I need a period where I get up every day but do almost nothing beyond eating and toileting, but there's always a point after a few weeks where this becomes counter-productive—everything hurts, I can't sleep, and I feel dreadful if I don't do enough. They're only minor activities such as bits of household cleaning, but they might be challenging enough for some pwME on a really good day.

Hope that helps in some way!
 
I would also be curious about this....
I have only my own anecdotal story...
I spent the 6 months of July - Dec 2021 in London mainly just resting, playing playstation and watching tv, with occasional short walks / going out to do things around London (appts, family visits, occasional one-off jobs) when I had to, and some short home-based social things.
Then I tried to go a step further and went to the south of Spain for the 4 months of Jan - April 2022, lived in a tiny seaside town and did even less, just TV, sleeping, bits of reading, chatting to people on the phone, little bits of walking around the tiny town.
And a couple of times friends came to stay.

Before the start of all that rest I had generally been pretty active both in terms of work and physical activity.

Overall, sadly, it didn't seem to make much difference. Maybe a very slight improvement.
But I ran out of money and so came back to the UK and started applying for disability benefits etc, and working out how to still do some work (I enjoy my work), have enough money, get enough rest. I switched to trying to make things work within my current capacity, rather than deferring life until I get better.
Obviously I still desperately want to get better though!
And aware I'm very fortunate to have the capacity to do any work at all.

Whatever you end up doing @Shadrach Loom, it seems to me that it's worth trying a long period of rest, I actually massively enjoyed my time just playing video games and watching TV, despite naturally being an almost compulsively productive / work-focused person. There was something about allowing myself to completely let go of the pressure to be productive which was bloody lovely.
It seems like the worst that can happen would be it doesn't really help, and you get bored.. In which case you could always abort. Hope that doesn't sound very glib, but yea if the conditions allow it, seems like it's worth a go.
And I can give you some video gaming recommendations! ;)
 
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I've never been in a position to try a major block of unenforced rest. My concern would be to have a clear get out plan, having to re-up activity levels after even a shortish break is always painful - physically and cognitively and I rarely find that having 'stopped' is worth it, it's just easier to keep on the treadmill of optimal activity for as long as possible.
 
CRG said:
I've never been in a position to try a major block of unenforced rest. My concern would be to have a clear get out plan, having to re-up activity levels after even a shortish break is always painful - physically and cognitively and I rarely find that having 'stopped' is worth it, it's just easier to keep on the treadmill of optimal activity for as long as possible.
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Hmm. That’s interesting. Successive periods of working, each trickier to sustain than the last, have all followed shortish breaks. I hadn’t considered that interpretation.
 
I think it should be viewed the other way around, with the mass of deterioration following, sometimes, even a tiny bit of exertion. It's not so much that rest helps, rather it's that exertion can harm. But I don't see how this could ever be accepted in healthcare, seeing as they still can't even accept that what we report is valid information, they're still not even on step 1 of solving this problem yet. I still regularly see people who lead LC clinics, they are the damn leaders, who have clearly not learned a single thing and find nothing wrong with leading a clinic out of complete ignorance, since they don't even know that they don't know, can't tell the difference between success and failure.

When we think of rest, the focus is on the rest, rather than on what's actually being done: avoiding the level of exertion that will trigger a relapse. The evidence for exertion-triggered relapses is clearer to establish, it is abundant even. One problem with framing this as rest is that typically, rest means temporary leisure. So we should be talking about convalescence instead, it's very different from rest and it's not about recharging from normal life, it's a medical thing with a medical reason.

I see it as the equivalent of avoiding smoke-filled rooms when someone has asthma. It will not necessarily make their asthma better, in fact if they live in an area that is rather polluted, smoke-filled rooms or not, they're inhaling stuff that makes their lungs go nope-nope-nope. Avoiding thick smoke won't cure asthma, even though sometimes it does resolve naturally over time, although I think that's mostly childhood asthma. But it's clearly a good idea on its own, avoiding deterioration should frankly be considered important in healthcare, and this is what it's all about.
 
CRG said:
I've never been in a position to try a major block of unenforced rest. My concern would be to have a clear get out plan, having to re-up activity levels after even a shortish break is always painful - physically and cognitively and I rarely find that having 'stopped' is worth it, it's just easier to keep on the treadmill of optimal activity for as long as possible.
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I was only able to take time off because I was too ill to work, it wasn't negotiable. But when there isn't that level of illness, I'd agree entirely about breaks of only weeks in duration. Momentum is crucial, and every time I took a bit of annual leave, it was a nightmare to get going again.

When I was was self employed, doing part-time contracts lasting between three weeks and six months (often overlapping two or three projects), it was very different. I could operate by spreading about three days' work over the course of a week for a few months, and then take a break for a few months. As long as the contracts hadn't left me completely floored, getting back to it was enjoyable because I'd had enough rest.
 
rvallee said:
One problem with framing this as rest is that typically, rest means temporary leisure. So we should be talking about convalescence instead, it's very different from rest and it's not about recharging from normal life, it's a medical thing with a medical reason.
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Agree 100%. I wouldn't refer to it as rest if I were speaking to anyone other than an ME community, I'd call it recovery time.
 
Kitty said:
I was only able to take time off because I was too ill to work, it wasn't negotiable. But when there isn't that level of illness, I'd agree entirely about breaks of only weeks in duration. Momentum is crucial, and every time I took a bit of annual leave, it was a nightmare to get going again.

When I was was self employed, doing part-time contracts lasting between three weeks and six months (often overlapping two or three projects), it was very different. I could operate by spreading about three days' work over the course of a week for a few months, and then take a break for a few months. As long as the contracts hadn't left me completely floored, getting back to it was enjoyable because I'd had enough rest.
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That makes sense. Do you recall what the shortest period was which provided sufficient respite for you to return to ~20hr weeks? Three months? Five?
 
Shadrach Loom said:
Do you recall what the shortest period was which provided sufficient respite for you to return to ~20hr weeks? Three months? Five?
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It's slightly difficult, as it wasn't always consistent and not always by choice either. For instance, I might be ready for some work but have to wait a few weeks before something came up within striking distance of where I live*.

But on average, I'd say four to five months was optimal. That assumes that I was knackered but still functional when I finished—for instance, I'd still be visiting this board and not in a state where I had to conserve all my energy for the basics. That's why the 13-week thing benefit thing didn't work, it just wasn't quite long enough.


* Basically, after leaving my full time job, I made a living sorting out other people's scheduling and capacity mess-ups, often because they'd applied for numerous project grants and more of them were successful than they expected. I described my job title as Getting Emails Headed "HEEELP!".
 
rvallee said:
So we should be talking about convalescence instead, it's very different from rest and it's not about recharging from normal life, it's a medical thing with a medical reason.
Click to expand...

Coming back to this one, because @rvallee is quite right, and also because there’s something interesting about the history of convalescence. Victorian and Edwardian fiction is full of convalescence, partly because it’s a useful plot device for the protagonist to be packed off somewhere for a sedate adventure, but also because this was presumably a common medical intervention at the time - at least, for those who could afford it.

Is there any historico-medical research into which illnesses or indicators were supposed to demand a lengthy convalescence, and the preferred duration of the convalescence? Why and when did the idea start - and perhaps more importantly, why and when did it stop?
 
The Wellcome foundation offers a brief history here:

https://wellcomecollection.org/articles/XXurkhEAACgATLgi

It thinks that the decline in convalescent travel to rural locations such as spa towns was due to improvements in urban sanitation and housing: cities became less toxic for the recently ill.

I’m sure there’s more to it, though. The countervailing historical trend would be the fetishisation of exercise, which I think of as emerging in the 1930s across Europe.
 
It went on later than Victorian and Edwardian times. See my post above where I link my and my father's experiences ranging from 1930's to 1970's.

For me it changed between 1977 when I was expected by the GP to rest until I felt better and there was no suggestion of psych factors or deconditioning, and a separate episode in 1989 onwards when there was no suggestion of any need to rest and from then on was told to try to get more exercise, sometimes offered antidepressants, and only ever offered 1 or 2 weeks sick notes for work with no suggestion that I should try to rest during my sick leave.
 
Shadrach Loom said:
Coming back to this one, because @rvallee is quite right, and also because there’s something interesting about the history of convalescence. Victorian and Edwardian fiction is full of convalescence, partly because it’s a useful plot device for the protagonist to be packed off somewhere for a sedate adventure, but also because this was presumably a common medical intervention at the time - at least, for those who could afford it.

Is there any historico-medical research into which illnesses or indicators were supposed to demand a lengthy convalescence, and the preferred duration of the convalescence? Why and when did the idea start - and perhaps more importantly, why and when did it stop?
Click to expand...

Do any of our German members have any information on this, as the German health system still makes regular use of Die Kur? My understanding is that if their doctor supports it an individual is entitled to so many weeks convalescence (3 weeks?) at a Spa or Kurhaus? However I am aware of a couple of friends who have had significantly longer but I was not sure how much it related to physical health, how much to mental health and how much to general well being.

Is there any evidence of the efficacy of die Kur system for difference conditions, including ME and Long Covid? (Perhaps there will not be a lot relevant to ME, given in general German medicine has not been very proactive in this area.)
 
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