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

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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.
 
Dolphin said:
Reminder that this is the person who wrote this:


If she was just a random patient on the Internet, I probably wouldn't bring it up.
But she co-authored this preprint:

https://wellcomeopenresearch.org/articles/5-224
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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.
 
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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.
 
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If you were picking between long covid and an ME diagnosis I think a lot of people would stick with Covid.

despite the issues about perception of it being mild in younger people it has the advantage that 100% of the public have actually heard of Covid. How many of the public have ever heard of ME, some have heard of CFS but still........
 
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
My own symptoms now include fatigue, hoarseness, wheezing, fizzy nerves, numb limbs, leg aches, shortness of breath, varying blood pressure from very high to very low, night sweats, insomnia, and a strange buzzing in my body (I was relieved when I realized that many long-haul people also have this frightening feeling).
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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.
 
Forbin said:
Sounds quite similar to many M.E. symptoms - though the shortness of breath might be more of a covid lung thing.
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Yes, it may be. But yesterday I saw this post from June about a study of people with CFS:
(2009) Cardiovascular Dysfunction with Low Cardiac Output Due to a Small Heart in Patients with Chronic Fatigue Syndrome, Miwa et al
Possible cardiovascular symptoms including shortness of breath (32%), dyspnea on effort (28%), rapid heartbeat (38%), chest pain (43%), fainting (43%), orthostatic dizziness (45%) and coldness of feet (42%), were all frequent complaints.
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I haven't read the study, so I don't know what the approach to selection of participants was, or what framing they might have had to report those symptoms. But this was a 2009 CFS study.

I've experienced 'difficulty breathing on effort' at times. If my illness had started with Covid-19 rather than what seemed to be a gastrointestinal flu, then perhaps I would have paid more attention to breathing issues and reported them more often.
 
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Kalliope said:
Dr. Nasreen Alwan elaborates a bit more what symptoms people with long covid are experiencing in the BBC radio programme "Long Covid" with Adam Rutherford.

She says she got ill in March and that it continued with fluctuating symptoms. She then got aware of others like her. She's asked what the range of the long term symptoms being seen are and says:

The range is huge. Fatigue and tiredness seems like a common thread, although the extent of it is hugely variable as well. But the other symptoms vary from cardiac symptoms, including chest heaviness. We’re not sure really if it’s respiratory or if it's cardiac or if it's muscular in origin. But also there’s widespread muscle ache….

Palpitations seems to be common. Cognitive problems. What people are describing as brain fog. Problems with memory or feeling pins and needles. And muscle aches or leg pains. Joint pain seems to be a common thread. Any they really range in term of severity. Some people just can’t go back to doing any of their daily activities at all that they used to do before. Just going up the stairs. The stairs seems to be a common thread.

(From the first minutes of the programme)
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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.
 
Forbin said:
Sounds quite similar to many M.E. symptoms - though the shortness of breath might be more of a covid lung thing.
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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.
 
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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.
 
Forbin said:
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.
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Thank goodness for the growing numbers of support groups online, connecting us with other long-haulers around the world.
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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.
 
rvallee said:
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.
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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.
 
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