Article in Guardian: I rested my way to recovery from ‘long-haul Covid’. I urge others to do the same | Fiona Lowenstein

[Sly Saint]

I am not the first person to remain ill after a viral infection, and I am certainly not the first person to utilize rest and pacing in my recovery. A few months after I fell ill I began to connect with people with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), a debilitating chronic post-infectious condition that affects millions of people, but has been historically unrecognized and underfunded for research.

Many people with ME/CFS swore by rest and pacing, describing its effectiveness against an ME/CFS symptom called “post-exertional malaise” (PEM), which the CDC defines as “the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.” This described my “crashes” after hours of work at my desk, and is now an emerging hallmark symptom for many with Long Covid.

Unfortunately, the importance of rest and pacing for people with ME/CFS and PEM has sometimes been downplayed in favor of more aggressive measures of supposed treatment.

In 2011, a now-discredited study in the Lancet argued that a form of cognitive behavioral therapy (CBT), and what the researchers called “graded exercise therapy” (GET), were the most effective forms of treatment for ME/CFS because they forced patients to overcome a fear of exercise that the researchers argued was keeping patients ill.

These claims have since been debunked, and the Centers for Disease Control (CDC) and other health agencies have stated that ME/CFS is an illness with biomedical origins which can be made worse by exercise, rather than an illness whose supposedly psychological roots can be conquered via GET and a bastardized form of CBT.

full article here:
https://www.theguardian.com/commentisfree/2021/jun/21/long-covid-recovery-coronavirus


eta:
note: there appears to be a 'bastardized' version of this article, presumably created by bots, circulating.
(the one I've spotted is from NZ).

 

[Andy]

 

[Trish]

Really excellent article.

 

[ME/CFS Skeptic]

I strongly believe this recovery was only possible because of my early access to care and three months of intense, sustained, radical rest.

I doubt that activity levels and rest have such a big influence on prognosis. It would be good if research on long covid could provide some reliable data on this.

 

[Kalliope]

I doubt that activity levels and rest have such a big influence on prognosis. It would be good if research on long covid could provide some reliable data on this.

Yes, it would be great to have more information on this.

I worry some might think that lack of improvement must be down to the patient's lack of either sufficient rest or exercise.

Having said that I'm very glad to see this opinion piece in the Guardian with good information on pacing versus graded exercise, and am impressed of Lowenstein as spokesperson!

 

[Peter T]

I doubt that activity levels and rest have such a big influence on prognosis. It would be good if research on long covid could provide some reliable data on this.

We have a number of unanswered questions in relation to this:

• What if any are the differences between ME and post viral fatigue syndrome (PVFS), particularly in relation to the potential for spontaneous recovery?
  
• Does PEM distinguish ME and PVFS in any way?
• Is it accurate to say that people with PVFS will always eventually recover, but not necessarily those with ME, is this the only way to distinguish between the two?
• Do only people with PVFS show spontaneous recovery or do some people with ME also show spontaneous recovery in the early days (first couple of years?)?
• Is over exertion and/or PEM a block for spontaneous recovery for either or both conditions?
• Is remaining below the exertion thresholds for triggering PEM sufficient to encourage spontaneous recovery or is proactive resting necessary to create the best conditions for any spontaneous recovery in either or both conditions?
• Will repeatedly triggering PEM trigger deterioration in PVFS or just with ME?
• Are people with PVFS at risk of future relapses following spontaneous improvement or recovery, in the same way as is seen in ME?
• In Long Covid do those with symptoms that seem to parallel ME/CFS represent an homogenous group or do some have ME and others PVFS?

People with ME currently operate on a number of assumptions that seem to best describe our collective experience, including

• Repeated triggering of PEM or extended over exertion will worsen our condition
• Management of activity levels (pacing) is necessary to avoid worsening of our condition
• No consensus on whether active rest in the early stage reduces symptoms long term
• No consensus on whether active rest and/or remaining below PEM trigger thresholds creates the best conditions for spontaneous recovery
• No consensus about whether complete recovery is possible for some with ME

Is there any mileage in doing a poll to evaluate what are our collective assumptions on this here at S4ME?

 

[Ariel]

I was also very happy about this piece in the Guardian, as a lot of what they have published about Long Covid and ME/CFS has been inaccurate and harmful. I really like Fiona Lowenstein's writing and hope to see more of it in the future - I was also pleased to see the length of this piece; it wasn't edited down to meaninglessness.

I did share the concern about over-attributing recovery to rest. Although it seems you can make yourself worse by insufficient rest and through inappropriate exercise treatments, it's unclear how rest affects your prognosis.

I have rested since I got Covid last March as much as I could. I wasn't able to work due to previously moderate ME/CFS anyway. I continued to get worse. Sometimes I worry I didn't rest enough somehow, or that I haven't recovered because I still tried to do a few walks in the early days before I became completely house/bed bound, or that maybe I deteriorated partly because there was construction outside that meant not getting enough sleep. It's easy to blame yourself. I stopped getting worse when I was able to get more rest, but I do not think there is any amount of rest that could have stopped the devastating change that seemed to be happening in my body.

It seems it's fair to say that rest gives you the best chance of getting better and that the piece's main point is that this best hope is really only available to the comparatively financially (or otherwise) privileged. (Similarly in my own case it is perhaps the case that I was only able to become moderate ME/CFS from severe over the course of many years because my parents supported me and took care of me when I was most ill. I had ideal circumstances for improvement.) This should be distinguished from the claim that rest caused recovery.

I hope we find out more about these mechanisms over the coming years. Why do some recover where others don't? For me it really felt like something happened in my body over a period of months.

 

[Suffolkres]

Really excellent article.

A breath of fresh air......

As was this remarkable programme , so positive! Gives hope for conditions like ME.....perhaps.....!?

Marvellous Medicine
Analysis
Has the pandemic enabled us to accelerate the pace of drug development?

https://www.bbc.co.uk/programmes/m000wytt

 

[Robert 1973]

I doubt that activity levels and rest have such a big influence on prognosis. It would be good if research on long covid could provide some reliable data on this.

I agree. We must apply the same standards to assessing evidence of efficacy for resting or pacing as we do to CBT, GET or LP. There is good evidence that CBT, GET and LP can be harmful, and common sense suggests that pacing is probably the best management strategy, whether that maximises quality of life within the condition or increases the probability of natural recovery, but it frustrates me if/when people claim or imply that we know more than we do and that people will recover from PVFS or ME/CFS if only they are given the right advice. We just don’t know. Most people seem to get better from PVFS whatever they do, and I strongly suspect that many of us would not have recovered whatever management advice we were given. But it would good to have some reliable data.

No amount of resting in the early months/years ever made me feel well. Resting enabled me to do a bit more, and doing too much made me feel worse. But I still felt very unwell all the time if I rested and stayed within my energy envelope – and that is still the case. [Edit to add: I know this is just my anecdotal experience, and I’m not suggesting it should be treated as anything more or less than that.]

NB This is not a criticism of the Guardian article, or its author, as I’ve not read it yet. It’s just a response to the comments above. I’ll go and read the article now…

 

[Invisible Woman]

I doubt that activity levels and rest have such a big influence on prognosis. It would be good if research on long covid could provide some reliable data on this.

I agree.

Interesting though that "sustained, radical, rest" didn't impede recovery or make her worse either though.

I agree with the comments made about rest. Personally, I have never felt rest made me much better, it did however seem to help stop me getting worse.

However, the argument that prolonged rest is harmful and leads to perpetuation of symptoms has been a mainstay of the BPS cabal's devotion to increasing activity. Interesting that in this case rest hasn't prevented recovery as some would like us to believe.

We tend to hear a lot about patients who attribute improvement to doing or taking something - supplements, therapy, standing on paper circles, so it is interesting to hear someone attributing recovery, at least in part, to rest. Just to add a little balance to the narrative.

 

[Jonathan Edwards]

I would be happy to take this article a little tongue in cheek:

So that's the nutty professor's N=Me
This is my N=Me

Nah-nah-na-nah-nah! Two can play at that game. And since you did it first you can't complain.

 

[Ariel]

I would be happy to take this article a little tongue in cheek:

So that's the nutty professor's N=Me
This is my N=Me

Nah-nah-na-nah-nah! Two can play at that game. And since you did it first you can't complain.

I agree and point taken but I can't get past the fact that according to his account he aggressively rested at the outset too! Shame we can't "find common ground"!

 

[Robert 1973]

I would be happy to take this article a little tongue in cheek:

So that's the nutty professor's N=Me
This is my N=Me

Nah-nah-na-nah-nah! Two can play at that game. And since you did it first you can't complain.

Yes, and it’s positive that the guardian has commissioned this counter article. LC patients seems to have more influence on Guardian editors than people with ME.

However, as @Ariel points out, most of Garner’s recovery seemed to happen when he was resting and pacing. As far as I recall, by the time he was contacted by his Norwegian guru he was walking 5km a day with no payback and feeling well. He could have continued to cautiously increase activity to see if he got any PEM but he decided to chance it and step things up more quickly. Thankfully for him it seems he was fully recovered as that stage as he didn’t get any payback. If he’d continued pacing he would almost certainly have had exactly the same result but it may have taken a little longer to get back to his military training camp. On the other hand, if he was still getting PEM he could have been set back a long way by his gamble.

So in fact we have two histories which are not dissimilar, and consistent with what the evidence tells us about the likely outcomes for most people with PVFS. Where they diverge is in their interpretations and storytelling.

 

[adambeyoncelowe]

I would be happy to take this article a little tongue in cheek:

So that's the nutty professor's N=Me
This is my N=Me

Nah-nah-na-nah-nah! Two can play at that game. And since you did it first you can't complain.

That was my take too. The headline seems to be a direct refutation of Garner's.

 

[hinterland]

That was my take too. The headline seems to be a direct refutation of Garner's.

Yep, she was staring down the barrel of M.E but craftily managed to disarm it by playing dead. Paul ran away hither and thither, flailing his arms.

 

[Mithriel]

People with longcovid are looking for advice now and do not have time to wait for the science to be worked out.

Paul Garner's take on pushing yourself, ignoring being ill and exercising your way to health fits neatly with society's vision of good health so someone who says that resting and doing only what you feel capable of doing helped her is all to the good especially as the feeling in the air is that doing so will make you sicker and sicker.

From our perspective, we know that exertion makes ME worse and that rest does no harm so in a sea of ignorance at this time it is not wrong to think this is something that should be published in a paper.

 

[Mij]

My experience with having ME for 30 years and interacting with pwME, is that some of us develop comorbidities over time that will determine the progression of the illness, spontaneous recovery isn't dependent on resting early in my experience, but does prevent PEM from becoming worse.

Some of us reach the point of no return from over exerting over the years, so spontaneous recovery is pretty much zero at this point.

 

[Peter T]

Some of us reach the point of no return from over exerting over the years, so spontaneous recovery is pretty much zero at this point.

I think we have a consensus that appropriate rest and avoiding PEM are important to avoid worsening ME. But we lack a consensus as to whether sufficient rest early on in the course of our condition would make a positive difference to our long term prognosis or not.

Personally I wonder if I had not tried to return to work immediately following my glandular fever if that would have changed the course of my ME. Now approaching 30 years down the line I agree that recovery is unlikely for me, even if there is a treatment for ME I suspect some damage is now irreversible, for example I suspect now some of my cognitive impairment reflects irreversible brain damage, though some is potentially reversible if the ME can be turned off.

Interestingly, though I wonder if appropriate convalescence after my initial trigger infection would have helped, the course of my own ME suggests early rest is irrelevant. Associated with reduced activity, I went half time at work, I experienced after a number of years what at the time I regarded as a near total recovery. For several years, though I was cautiously increasing my activity levels, I did not experience obvious PEM. However associated with a bout of presumed seasonal flue I had a massive relapse over the Millennium New Year, from which I have never recovered.

Long Covid may offer the opportunity to answer such questions, so it is important that articles like this get widely read. [added - though we don’t know if either Prof Garner’s or the present author’s Long Covid are the same or different as each other or as Long Covid involving virally triggered ME.]

 

[Mij]

And there's also remitting-relapsing episodes that occurs with PVFS and ME.

I think we have a consensus that appropriate rest and avoiding PEM are important to avoid worsening ME. But we lack a consensus as to whether sufficient rest early on in the course of our condition would make a positive difference to our long term prognosis or not.

I rested very well for the first 7 years and reached a level of 80-90% improvement. I don't believe resting for another 5 years would have made any difference in my situation.

When we start exerting ourselves again is when we are reminded that we have ME.

 

[Mij]

Personally I wonder if I had not tried to return to work immediately following my glandular fever if that would have changed the course of my ME.

I felt pretty much recovered after 9 months of PVFS and returned to work. My equilibrium and sleep was the first sign that something was wrong after only 10 days. I wasn't fatigued or sick, it felt like a switch had turned off.