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The tragedy of long COVID

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March 01, 2021

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Comments

Mark Donovan
October 23, 2020

Thank you for the article. I had mild Covid-19 symptoms in early April, but did not quality for testing at that time. I have the Long Hauler symptoms. I had cardiology and pulmonology testing done over the summer, but they didn’t show anything definitive.

Tuesday, I read your article on CFS. I discussed it with my doctor and even though I am not officially diagnosed, she suggested that I starting living my life to CFS guidelines, as far as pacing myself.

After reading more about ME/CFS, so many odd medical issues, that I never had answers for, now make sense. While it sucks not having a cure, knowing what is causing the issues makes it easier to deal with them.

Molly Shaw
October 18, 2020

Thank you for information. I’ve been sick since March 21st, didn’t get tested for covid19 until I was sick for weeks and tested negative five times. I have all of the ongoing issues you listed and it is a struggle just to breathe. I also had inflammation issues before this virus.

Claire
October 17, 2020

As my husband was in a Covid ICU for 2 weeks, I was home, on my own to deal with”mild” Covid.

I basically slept a lot, drank lots of Gatorade, kept a close watch on oxygen levels and cried.

We both recovered. Now we are both having hair loss. I’ve been through chemo and have had to deal with chunks of hair coming out. This is not like chemo, but it is not good.

It’s been a sad and tough road. My mom died of Covid in April, we both got Covid and watching the number of so many people dying is heart wrenching.

Wear masks, social distance and wash your hands, that’s what my mom would always say.

Stay safe. Be well.

Kolya Krece
October 17, 2020

Post-COVID cases of ME/CFS will not actually place much of a load on the health care system for the simple reason that the health care system by and large ignores people with ME/CFS. It does not devote much in the way of resources to studying the physiology of their illness. Nor are many resources allocated to treating people who are so sick with ME/CFS that they are bed bound or home bound.

So don’t worry – if the past is any guide post-COVID ME/CFS patients will be treated just like most ME/CFS patients have already been – they will be ignored and their suffering largely delegitimized and minimized.

Amber Slover
October 20, 2020

What you’ve said is so very sad…. and true.

Lisa
October 16, 2020

Long-haulers should treat themselves with ‘aggressive rest’ in the hopes of recovering their former level of function. I have pushed through ME, rheumatoid arthritis and fibromyalgia for far too long out of necessity. I keep getting worse.

Nancy Blake
October 16, 2020

The connection with exertion, therefore the importance of rest should be researched, but it won’t be, because who would make any money from telling patients what our grandparents told us: when you’re sick, go to bed and stay there until you’re better.

We know viruses can remain latent and be reactivated, producing apparently unrelated outcomes: chicken pox to shingles, German measles to fetal damage, for example. Is this what is happening in long covid, when symptoms develop after the patient seems virus- free?

We know that our immune system requires energy to fight a virus. But ‘sickness behaviour’, Nature’ s way of
making us conserve our energy for use by our immune system has been stigmatised by psychiatry: CBT and exercise have replaced convalescence with ‘rehabilitation’.

We myalgic encephalomyelitis veterans of decades-long incapacity and intractable pain often brought on by graded exercise look on with pity and horror at news clips of long term (three months!) covid patients collapsed over exercise bikes…. please don’t let what was, and still is done to us be inflicted on them!

Ramsay’s patients given six months rest actually recovered. Today there is the occasional Facebook post: ‘My doctor just gave me a six month sick note and told me to go home and rest. I’m completely well now.’

The 2015 IOM report on ME/CFS concluded that this is a disease of which the defining characteristic is that ‘exertion of any kind – physical, cognitive or emotional – may adversely affect many organ systems…’. (last sentence before the recommendation for the name ‘Systemic Exertion Intolerance Disease ‘).

Rest, convalescence, good nursing care, beginning with guidelines for self care and home nursing , and continuing for the long term when needed must be the way forward.

Ramsay, on ME:
‘The syndrome which is currently known as Myalgic Encephalomyelitis in the UK and Epidemic Neuromyasthenia in the USA leaves a chronic aftermath of debility in a large number of cases. The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.’
(Ramsay, M. Myalgic Encephalomyelitis: A Baffling Syndrome With a Tragic Aftermath.

Kate Porter
October 15, 2020

Thank you for covering this topic. I’m 35, almost at 7 months of lingering symptoms and was previously healthy.

Amy Watson, a long hauler from Oregon is the first to label us “long haulers”. She created a group for us with that name — for those of us who connected back in April and realized we were far past the average 2 week period they claimed it would take to recover.

Does Harvard have any plans to help uncover causes and potential treatment for these long term issues? We don’t necessarily fit the ME/CFS profile (some overlap but large differences as well).

Mary Smith
October 19, 2020

I had all of the symptoms in February. But when they tested me for antibodies in June they were not present. I never want to ever be that sick again. I couldn’t taste or smell for over 6 weeks . I still ache and my hair continues to fall out. My brain was mush for months and I never had COPD stage 1 before. My brain is different and can’t make decisions. Anybody have any ideas?

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