News about Long Covid including its relationship to ME/CFS 2020 to 2021

That's brave of R Pope to be so clearly definitive without any scientific backing.

Time has a way of exposing our opinions to reality.

And the internet remembers.

 

It takes a particular sort of talent to make us almost lose patience with some people with chronic illness. They probably do not recognise how fortunate they are to have wiser heads suffering similarly.

In all the history, or even prehistory, of the human race there never has been such an illness.

 

Yeah that's why I thought it was interesting. That the people who reject ME, or at least at first and are struggling to accept the implications, still say the exact same things for the exact same reasons about the same issues as we have, going back decades.

Regardless of how the doubters view this, the symptoms and context are largely the same, the gaslighting is the same, the misrepresentation and real-life consequences are the same. I assume most thought that medicine has its shit together and would approach this the way we have seen things mobilized for example acute flaccid myelitis, that we'd have advanced lab research and people putting in all the stops to figure it all out and are now seeing that this will not be happening without addressing the exact same issues that have plagued us.

I perfectly understand their motivations to reject a discriminated disease, viewed as a non-disease by medicine, that is effectively misrepresented as some vague anxiety/depression/fatigue. It is entirely rational. And yet they face the same issues and now have to face the same fundamental problems, all the way down to a massive failure of basic vocabulary.

 

Maybe Ms Pope's views on ME/CFS were "informed" by BPS opinions and that's why she knows ME/CFS is clearly not what people with long covid have. After all, people with long covid have a disease with many symptoms, not just fatigue, and deconditioning makes no sense as explanation either.

A problem we have with ME/CFS is that a lot of people aren't merely ignorant, they're misinformed by BPS people.

I suspect this is what happened with Paul Garner as well. Initially his views on ME/CFS were so far from reality he didn't recognize the similarities at first. After he read articles written by actual patients or competent doctors he understood he had PEM.

 

I saw someone on Twitter today claimed that an individual who had told their story in the media had previously said they had a negative test for Covid-19, but was now saying they were a long Covid case and were interviewed as such. This person on Twitter thought they may simply have been in ME/CFS case and were perhaps influenced by the fact that if you have Covid, with some jobs in the UK you can get full pay when out sick (including the type of job this person does). They were also suspicious of another person who had deleted all their tweets before June 2020.

I'm not going to highlight the individuals as it's not conclusive proof in my mind, but it's one possible issue that could possibly be at play in general.

 

An article Forbes Magazine - Sep 30, 2020:

Six-Months As A Covid Long-Hauler: Unending Symptoms, Many Unknowns
https://www.forbes.com/sites/lealan...unending-symptoms-many-unknowns/#77443d2b3dc8

Sounds quite similar to many M.E. symptoms - though the shortness of breath might be more of a covid lung thing. I know there have been conversations on other threads here about experiencing a strange buzzing feelings inside the body. I certainly experienced that for years on end after onset. The overlap of such odd, yet specific, symptoms certainly seems eerie.

 

I have too, but the author talks about developing the "worst breathing symptoms" she has ever experienced, as well as keeping a bag packed in case she had to rush to the hospital. Her oxygen levels were "borderline," but her x-ray didn't show pneumonia.

 

Doesn't Dr Pope realise that " passing out unconscious" equals " psychogenic non-epileptic seizures.?

 

To me the stairs issue is very M.E. I noticed on the previous comparison between M.E. and Long Covid symptoms that breathlessness was listed for covid but not for m.e. Well I can tell you I was getting out of puff climbing my mum's stairs yesterday! Breathlessness has always been part of my M.E. and my mum's. It comes and goes but when I have it it always feels like I've got one of those heart/lung conditions where you need an oxygen tank under one arm. Does anyone remember when M.E. folks used to be accused of overbreathing/hyperventilating.

 

Is shortness of breath the same as out of breath? I've experienced feeling out of breath quickly from viral infections, particularly when I had HHV6 and EBV reactivation. One time I had to lie down on someone's lawn because I couldn't walk another step on my way to my doctor's clinic.

 

Would this exlpain some longhauler's ME-like symptoms?

I'm wondering where to draw the line...do physical findings exclude an ME diagnosis or not?

Long Covid: Long-term effects of coronavirus include damage to heart, liver, kidneys - Oxford study reveals

"50% ofpatients have evidence of heart, liver or kidney damage, with a median age of 43 years"

"The first data from patients recovering from Covid-19 (160 patients, three months post diagnosis, 79% non-hospitalised) reveals many patients had measurable organ damage - even amongst those not hospitalised."

 

Is there evidence of organ damage from ME? How many patients died from ME in the early stages of less than 6 months? I think Dr. Klimas made the statement that ME was like late-stage AIDS that lingers on for decades.

Injuries yes. There are various processes leading to multi-systemic biological abnormalities- immune dysfunction, pro-inflammatory response (especially at early stages of disease), autonomic nervous system, oxidative stress and metabolic dysfunction.

 

I happened to be reading a blogpost last night by someone from the UK who was not convinced lockdowns at this stage were justified by the level of deaths or even the level of hospital admissions (not an argument I’m convinced by). Anyway one person in the comments highlighted the level of “ME-like” problems that were arising. Judging by the comments, he didn’t seem to be a patient or someone particularly knowledgeable. The blogger then replied to basically agree and the level of “ME-like” problems was probably the main reason care should be taken about the spread of Covid-19.

Doesn’t prove anything but I thought I’d share.

 

Both a curse and a blessing, but it's the sheer mass of people affected that makes this a disaster but also makes it possible for the disaster to end.

Had infections been significantly lower, this group would have been thrown down the memory hole like the rest of us. Even the massive scale barely makes things budge because too much inertia in the wrong direction has to be shed off.

Nothing was ever going to change without those circumstances, without a pandemic not only happening but being so completely out of control that the number of those facing chronic problems becomes impossible to ignore. The suffering had to be large enough to simply be noticed.

And still, nothing but resistance within medicine. The dogma won't let go of its bite. The fairy tales need to persist, the millions of lives sacrificed to them have to mean something. So much that they must continue to eat people alive, simply because it's what they always did.

 

Wait it's not hysterical vapors?

 

Interesting thread posted on Reddit: [Serious] People from Reddit who survived Corona, how has your daily life changed? What are the side effects after? : AskReddit

This is a default sub with millions of users so does not bias in favor of people with Covid or long Covid. Gives a more generic outlook, though obviously comments with "had it, now fine" are slightly less likely to rise up than those who have lots to say.

 

I’m not really saying anything new but this is why it is important that the ME/CFS connection is made despite the complaints by a few that can arise on social media.

 

https://www.rte.ie/news/coronavirus/2020/1001/1168695-covid19-recovery/
https://twitter.com/user/status/1311711930554486784