We Already Know Enough to Avoid Making the Same Mistakes Again With Long COVID, 2021, Davenport et al

Based on experience with past coronaviruses, the emerging challenge of prolonged symptoms after infection with the novel coronavirus 2019 (SARS-CoV-2) is unsurprising. Data from a large international web-based patient survey indicate substantial symptom overlap between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at 6 months following the onset of first symptoms, including three quarters of participants suffering from fatigue and postexertional malaise, and over half with cognitive dysfunction.4 Apparent similarities between the presentations of long COVID and ME/CFS suggest that we may apply what we have learned from ME/CFS to long COVID.

Open access, https://www.jospt.org/do/10.2519/jospt.blog.20210310

 

Just what have we learned about ME that can be applied??? Avoid things that make your symptoms worse? GET/CBT won't help? Don't expect actual help from the medical system?

 

I agree with your point.

... But the concept is not a bad one: to avoid making all the very same mistakes again under a new name.

reviewing the article I found the following suggestions:

NB I’ve selected the bits I quote but there are some assertions in the article which I would say are as yet unconfirmed observations.

 

There is a lot that can be done for ME patients right this minute which would be useful for longcovid as well.

Believe the patient and take what they are experiencing seriously, especially do not assume it is caused by depression or anxiety even if they are depressed and anxious about their situation.

Medical personnel should ask questions to find out exactly what the patients are trying to convey and what they mean by brain fog, PEM and such like. Ask them to describe how their life had changed in detail. "I feel tired all the time" could cover a wide range of difficulties. if the doctor assumes it means "I don't feel like doing very much" they will not be useful to someone who can't stand without help.

Symptomatic treatment is helpful.

Help with benefits and other official things in the same way that is done for someone newly diagnosed with MS.

Consider aids to save energy. Referral to an occupational therapist for urgent assessment may be the single most useful thing especially if properly trained OT services are set up. It is a myth that "people give up" when they get mobility aids. Most people want to get better and are more likely to need to be taught how to do less rather than encouraged to do more.

Talk to family members about why it is important to do all that can be done early to prevent long term problems.

People can be helped long before the exact cause of a disease is found or a treatment discovered.

 

Actually, advice to avoid things that make the patient worse (included in the famous phrase "first, do no harm") is underrated.

Doctors get little to no medical training about ME/CFS. They usually think a little exercise is good for everyone, no matter what diagnosis. And they are often so eager to "do something" that they may not realize the risks.

The article said a lot more than this, of course. But even this very basic advice, something that seems obvious to us, is not followed by many doctors.

 

Absolutely.

Sometimes it even comes from a place where they are trying to be helpful & supportive but have no idea of how ignorant they are when it comes to ME. They literally don't know that they don't know.

I have been in the situation of having paid good money to see a specialist about something else to have then start to waste my appointment and thus my money opining about ME and demonstrating a complete lack of understanding.

Completely shock when I stopped them, pointed out I'd already told them I had a CFS specialist and asked them what qualified them to give an opinion. I asked if they would be as quick to give an unasked for opinion to a cardiac patient who was already following advice from a cardiologist, for example.

The problem is threefold - firstly, they don't see how serious ME can be and, secondly, they're giving advice they don't believe can harm anyone and they're wrong on both counts. Third, the only people trying to educate them are the ME patients they come across and they're automatically discounted as having false illness beliefs.

 

Recommendation #1: Don't name it "Covid Fatigue Syndrome."

 

Yes, that's true, but with ME, what makes a person worse depends on the person, so there is no list of what everyone should avoid. Strenuous physical activity doesn't make my ME worse; I'd probably be worse off if I avoided exercise. There are foods and nutrients that make my ME worse, but other people use them to reduce their ME.

Paying attention to what makes you, as an individual, worse, and avoiding it is just common sense, so it doesn't qualify as being 'learned from ME'. Doctors should listen to patients when they say that "x makes me feel worse", even if x's effect doesn't have a clear theoretical basis, but that too isn't ME-specific wisdom.

Doctors should have learned from ME that vague complaints about fatigue, brainfog, etc, despite the standard tests showing normal results, should not be dismissed as having no biological basis, but most doctors still haven't learned that, so, quite sadly, that doesn't count as something 'learned from ME' either.