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RANDOM THOUGHTS: Is LongCovid Actually ME/CFS In A Spiffy New Suit, And Does It Seem That Drs Are Pretzling Themselves Not To Call A Spade A Spade ?

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One never knows, do one ? — Unknown
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I’ve suspected for a long time that what they’re calling Long COVID, or
Long Haul COVID, or LongHaulers, is way too close to ME/CFS in its symptoms and effects
for this not to have been noted by the highly trained minds in the medical profession (insert
sarcasm emoji here), and I’ve wondered why no else is bringing this up, other than vague
mutterings about “apparent” similarities between the two. And I know I could be way
off-base here, but felt the need to, you know, share ....



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I’d say the similarities are way more than just “apparent”. They’re almost absolute,
and very real ...Tho apparently, not undeniable ...


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And of course there’s the unavoidable, almost automatic, mental connection
between the predominance of previous EBV infections (Epstein-Barr Virus, i.e., mononucleosis
among others) in such a large number of our population, at least as expressed here on PR, and
COVID, another viral infection ...



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Once again, the supremacy of the insurance industry leaps to mind,
and the fact that they’d be out a giga-zillion dollars if M.E. were proven to be ‘real’, in medical
terms. Not to mention the effects on state disability payments. We all, or I’m pretty sure most
of us, are familiar with those metrics, and the possible reasons that M.E. STILL isn’t accepted as
a ‘real’ illness, with very real effects on lives, on the quality of those lives. And we’re all pretty
familiar with the futility of trying to get recognition of those effects on our lives from either of
those two basta…. uhhhh, bastions of care and concern …



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So I was fascinated by this article in LiveScience, which I’ve posted a link to below...


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Here are a few excerpts for those of us too weary and bleary to wade thru
the whole thing …


“Many researchers point to the similarity between long COVID and chronic fatigue syndrome
(CFS), a condition previouslylinked to immune dysregulation.



"Chronic fatigue is a condition of extreme fatigue in someone present for more
than six months, accompanied by post-exertional malaise," said Dr. Deepak
Ravindran
(opens in new tab), co-founder of the Berkshire Long COVID Integrated
Service in England. In many patients, it presents after a viral illness,
Ravindran told Live Science in an email.


"There are many similarities between long COVID symptoms and chronic fatigue
symptoms, including fatigue, brain fog, aches and pains, stomach disturbances, chest
pain and irregular heart rates," Ravindran said. "The present understanding is that there is
likely to be some underlying mechanisms that are similar to both conditions."



There are no known curative treatments for long COVID, but there are some ways to
manage symptoms, Katz told Live Science.


According to the review in Nature Reviews Microbiology, pharmacological
treatments for long COVID symptoms include:


• Intravenous immunoglobulins: Immunoglobulins, often referred to as antibodies,
are proteins released by the immune system to identify and neutralize bacteria and
viruses. Patients are given a cocktail of these through a drip into a vein to treat
immune dysfunction.


• Low-dosage naltrexone: Medication primarily used for the treatment of alcohol
and opioid use disorders and also prescribed off-label to treat some chronic pain and
autoimmune conditions. This helps reduce inflammation within the nervous system,
according to a 2014 review published in the journal Clinical Rheumatology
(opens in new tab).


• Beta-blockers: Medication prescribed for blood pressure and heart rate disruptions.

• Anticoagulants: Medications that prevent the formation of blood clots.


Other options include:

Antihistamines: Medication used to relieve allergy symptoms such as running nose
and congestion.


• Paxlovid: Antiviral medication used for treating COVID-19. Paxlovid reduces the
mortality and hospitalization rates in patients with COVID-19, but it's unclear how
effective this drug may be against long COVID symptoms, according to a 2022
meta-analysis published in the journal Annals of Medicine(opens in new tab).


• Sulodexide: Medication used to treat vein and artery disorders. Preliminary
study published in the journal Archives of Cardiovascular Diseases(opens in new tab)
has shown that Sulodexide may help improve cardiovascular symptoms of long COVID.”

Long COVID: 3 years on, here's what we know so far … 02-13
https://www.livescience.com/long-co...=push&utm_campaign=2023-02-13-Living-with-lon



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And for extra credit, here’s a very recently opened thread that notes the
incredible similarities between M.E. and Long Haul that might be of interest, particularly with its
references to Dr. Bruce Patterson’s Long Haul COVID tests


Comments

i can tell you one thing about medical community. if you put a post-it titled "sheep" on a duck, they will claim the duck is a sheep.
and they will explain to you in great length despite the sheep looking like a duck, quacking like a duck, beeing a duck, how that duck is not actually a duck but a sheep and you actually need psychiatric attention because you insist the duck is a duck and not a sheep.
 
i can tell you one thing about medical community. if you put a post-it titled "sheep" on a duck, they will claim the duck is a sheep.
and they will explain to you in great length despite the sheep looking like a duck, quacking like a duck, beeing a duck, how that duck is not actually a duck but a sheep and you actually need psychiatric attention because you insist the duck is a duck and not a sheep.

Yep.

This made me laugh. Thanks. I needed that today.

Thank you too, @YippeeKi YOW !! I can't always read long pages of info (sometimes takes me a couple tries over the course of a couple days) but you break up the paragraphs very nicely and put those cute little pictures too so it makes the whole experience more brain-digestible to my ME brain. :)
 
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i can tell you one thing about medical community. if you put a post-it titled "sheep" on a duck, they will claim the duck is a sheep.
Couldn't have said it better myself .... brilliant !!!! And very funny in a sort of heartbreaking way, because it's soooooo true :lol::lol::lol: :meh::meh:....


Thank you for posting @linusbert :):):)!!!
 
Thank you too, @YippeeKi YOW !! I can't always read long pages of info (sometimes takes me a couple tries over the course of a couple days) but you break up the paragraphs very nicely
I'm deeeeeeeply familiar with the struggle to get thru large blocks of text, which is why I carefully break mine up into what I hope are digestible bits.


Thank you for this, @Judee ..... much appreciated, especially on a really nasty day, which this one is, after 5 day string of 'em :hug::hug: !!!
 
Rufous has a few comments. Thank you for the provocative post, @YippeeKi YOW !!

To distract myself from ongoing developments here in my world, I thought I"d offer some uplifting comments like:

LDN: been there, doing that, a bit helpful. I am yet to be saved

Beta Blockers: take those already

the immune stuff: immunologists refused to agree to an appointment

Aspirin: I toss one down about once a week

Antihistamines cannot be tolerated when body is already Sahara Desert.

Paxlovid: HUH?

Is sulodexide FDA approved?

EGAD:sluggish::sluggish::sluggish:
Sulodexide is not yet FDA approved and has not been studied in children.
...


 
My daughter's friend received full disability.

She has a kind of PTSD and some anxiety from having been robbed at gunpoint.

Its many years later.

My daughter could not get over that somebody like OUR PEOPLE cannot successful receive disability while somebody who is merely paranoid gets fully supported.

I won't name names but most of us know the many around here so -deprived.
 
Rufous has a few comments. Thank you for the provocative post, @YippeeKi YOW !!
Well howdy !!! ..... and thank you for dropping by and for the nifty, witty comment ...

And for ... wait .... WHAT???!!???? NOT APPROVED BY FDA?? AND TOUTED IN A LIVE SCIENCE ARTICLE????

I'd expect that from Yahoo!!, but not from LiveScience ....

Damn. Just damn ....
 
She has a kind of PTSD and some anxiety from having been robbed at gunpoint.
Its many years later.

I have an old acquaintance who, with her husband, survived a breaking-and-entering robbery. They weren't hurt or worse, killed, but they were threatened with both those, and guns, and tied up for hours.


Neither of them can sleep thru the night, every little creak or clank or passing car wakes one or both. It's been 15 years. She cant be home alone. Ever. For any reason. I witnessed a sort of automatic response from her when someone slammed a door nearby us. She jumped straight up in the air and screamed bloody murder and was deeply embarrassed when her heart rate returned to normal and her eyes stopped strobing..

I know it doesn't seem fair, but having a gun put in your face and being threatened with death has powerful and long-lasting effects.

The real enemy for us aren't the lucky few who've manage to wring a favorable decision re disabilty out of generally unwilling and ungenerous hands, it's the fact that Drs simply won't admit that this is a real disease. Neither will any medical organization that isnt directly connected to ME or CFS. Even long covid Drs, most of them, wont cross that line. Not if they want to keep practicing and paying off those exorbitant student loans.

Insurance companies DEFINITELY dont want this to become a "real" disease, for obvious reasons, and no one who owes money, or has a spouse, or is raising a family or has aging parents is going to be brave enough to buck THAT 8,000 lb gorilla Ditto state disability boards.

So your daughter's friend is fortunate. She has a "real" condition, recognized by both the AMA and APA. Lucky girl, eh?
 
my brother asked me on the phone if my doctor considered me disabled.

He has heard me use the term, lately.

I answered yes, My doctor considers me considerably disabled by SEID (my diagnosis)

He asked me the name of this illness, recently.

Lately, I've lost my normal defenses including Do Not Bring Up the infirmities.

I told him an email I have long COVID only I"ve never gotten COVID. He asked about that remark (normally he ignores my remarks, or dares not ask followup questions).
 
I told him an email I have long COVID only I"ve never gotten COVID. He asked about that remark
The simple response is that that you were trying to give him a foothold on understanding your illness by means of the information developed about long COVID which is remarkably similar, if not even the same, as SEID (MECFS) .... At least he's checking in for a change ....
 
my brother asked me on the phone if my doctor considered me disabled.

He has heard me use the term, lately.

I answered yes, My doctor considers me considerably disabled by SEID (my diagnosis)

He asked me the name of this illness, recently.

Lately, I've lost my normal defenses including Do Not Bring Up the infirmities.

I told him an email I have long COVID only I"ve never gotten COVID. He asked about that remark (normally he ignores my remarks, or dares not ask followup questions).

yea family...
if the doctors didnt destroy a cfs sufferer with incompetence and ignorance and GET, family is always there to give the final blast.
i mean ignorant doctors is one thing... but ignorant family hurts on a special level. and my family is especially ignorant.
my mother goes as far as completely ignore the myopathy diagnosis from even the ignorant doctors. if its up to her i am just perfectly healthy, but to depressed to get my ass up.
the best thing i could do the last years for my health was telling family no to visit me more than once a year...

and i do not have a horrible family either, had a good childhood and a good relation to all family members, BEFORE i got sick. after wards they completely lost it, left me alone, didnt support me a bit, not even emotionally.
this disease is nt only crippling to the patient, it also makes family's go insane, literally.
 
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and i do not have a horrible family either,
I'm going thru a particularly nasty down-spike with massive joint/muscle pain on a scale I havent endured for quite awhile and faitgue and fog that's .... staggering.

I noticed that my totally adorable, supportive, & loving husband, DB, was watching me crab-walk across the master bedroom in obvious astonishment, as I clung desperately to furniture and walls along the way and groaned loudly, and I realized that everything Id tried to educate him on relating to how this crappy little dung-beetle of an illness expresses and what it feels like when it was really bad, like now, had only penetrated so far into his consciousness.

And it's not for lack of love or concern or belief, I think it's because if you ain't been here, you have no flucking idea. Like someone tryng to describe the bottom of the seabed and its strange denizens to someone who dwells at the top of a mountain. They may sort of get it, but they cant really penetrate the vast difference between their reality and yours.

But your sitch sounds much more difficult. They seem to really, really, REALLY not want to accept that anything's wrong with you. Im not sure how to get around that, but I think limiting their visits to once a year, and not all of them at the same time, may not be a bad idea. Maybe once every other year. Maybe by Skype ....

I'm sorry you're confronting this horrific and emotionally debilitating challenge, @linusbert .... it makes a miserably difficult situation impossibly insurmountable.

Sending supportive hug and commiseration ....:hug::hug::hug: :(
 
But your sitch sounds much more difficult. They seem to really, really, REALLY not want to accept that anything's wrong with you. Im not sure how to get around that, but I think limiting their visits to once a year, and not all of them at the same time, may not be a bad idea. Maybe once every other year. Maybe by Skype ....

I'm sorry you're confronting this horrific and emotionally debilitating challenge, @linusbert .... it makes a miserably difficult situation impossibly insurmountable.

Sending supportive hug and commiseration ....:hug::hug::hug: :(

thank you for your kind words.

i didnt want to moan, its more a sad reality i accepted years ago. now it is like it is.
just wanted to chime in that i know how it feels like when the backbone of your family is itching and not stabilizing.

on the contrary there was my girl which was really really supportive and did help me through everything. she is still around - though the whole sickness had a toll on her health as well :(.
also her family was understanding and supportive too.. they actually behaved like you would expect family to do. when they heard doctors behaviour they were disgusted and shared the sentiment. when i needed my silence, it was just ok for us all when i slept or rested on the couch while they were having family chatter on the kitchen table with her daughter. sometimes involving me a little bit. they even offered financial support, even when i wasnt their own. i did not accept that, but it was a nice gesture.

noticed that my totally adorable, supportive, & loving husband, DB, was watching me crab-walk across the master bedroom in obvious astonishment, as I clung desperately to furniture and walls along the way and groaned loudly
thats sounds horrible!!
i have never suffered that far, i was blessed that when i lie down and relax all symptoms would chill.
 
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also her family was understanding and supportive too.. they actually behaved like you would expect family to do.
they even offered financial support, even when i wasnt their own. i did not accept that, but it was a nice gesture.
They sound like absolutely incredibly, WONDERFUL people !!!

Who knows why your family is reacting the way it is. It could be bcause if they admit to, and recognize, the toll this mean-spirited little mower-blade of an illness is having on you, they might feel forced to rally round and offer emotional and financial support while you slowly get better. Maybe it's because they're afraid that if this can happen to you, it can happen to them, too, so they prefer to pretend that it's not happening at all ....

Humans. Go know ....
i have never suffered that far, i was blessed that when i lie down and relax all symptoms would chill.
I'm rarely this bad, but it's been a horrific 2 months, with an emphasis on the last 10 days, so I guess I was due.

I try to remember that something like this was my every day reality when I was bedbound and semi-comatose for something over 5 years, and once I can focus on that briefly, I realize how fortunate I am, relatively speaking ....
 
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You posted the blog entry the very day i was hit by the arrow of Covid rather than Cupid I was so careful for nearly 3 years.

Ive started a blog to try to “document” a journey as i think i will forever describe what remains of my live as pre-covid and post covid.

Not too long ago i attended a teleconference on Sjogrens. I asked a question saying that I was struck by how similar all the symptoms of Sjogrens presented seemed to CFS and even long covid. There was lots of hemming and hawing and a long pause. The speaker finally answered and proceeded to address long covid - but refused to acknowledge or mention CFS!!! What i remember of the The answer was that it was a hand wave about same symptoms different nechanisms.
 
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The speaker finally answered and proceeded to address long covid - but refused to acknowledge or mention CFS!!! What i remember of the The answer was that it was a hand wave about same symptoms different nechanisms.
Yeah, that's a great favorite, with no explanation forthcoming as to what particular '... different mechanisms ...' were causing all those ' ... same symptoms .... ' ...

I'm so sorry about your wretched experience with COVID, and I soooooo wish you could have tolerated the ViraCon. It really helped me thru the worst of it, and DB practically breezed thru it, the lout ....

How are you doing now?
 
and from civilizations back into tribes. circle of live it seams.
Right you are :thumbsup: :woot: .....since time immemorial ....Egypt, India, China, Britain, France, you name it, they've all done the tribal/civilization/tribal, lather rinse repeat, two-step ....
 

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