RANDOM THOUGHTS: Part Le Deuce …. Is LongCovid Actually ME/CFS In A Spiffy New Suit ?? I vote yes … Dr's vote with their feet …

Well, not to mention all those Long-Covid research dollars they wouldn't get if they called it ME/CFS.

A well-meaning person sent me an article recently that discussed a study where they looked at 2 (TWO!!!!!) cytokines in LC patients vs controls. And they concluded, yeah there were differences but "nothing significant."

I'm like why are they going back to square one when those type of studies have already been done: https://me-pedia.org/wiki/Cytokine (51 cytokines!!!!!)

Judee said:

Well, not to mention all those Long-Covid research dollars they wouldn't get if they called it ME/CFS.

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also not to mention all those studys for me/cfs they will now repeat because they do not accept me/cfs as related in any way.

this medicine "health" system, and this science is done. its dead. its become useless and just a waste of ressources. something needs to change!



though i have my own theory recently.
this sickness is a demon living from our suffering.
in that case, somebody does know a good priest for exorcism?
(the one thing i didnt try yet)

With my new PhD in: senior health care/ my husbands stroke/ the calamity....

we are in a complete Medical Crisis

It's like we just sit back and witness self destruction.

How many people are employed to NOT DELIVER any health care?

for every one nurse, doctor, CNA and Janitor, we have how many who exist to DENY DISCLAIM and convert your Gross Domestic Product into worthless dust.

Rufous McKinney said:

for every one nurse, doctor, CNA and Janitor, we have how many who exist to DENY DISCLAIM and convert your Gross Domestic Product into worthless dust

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exactly!
thats what i tell people when they say the medicine system is UNDERfinanced.. i tell them its OVERfinanced A LOT.
throw out the 90% of staff who absolutely do nothing. imagine how much money could be there to actually do something useful.

they talk about closing clinics to save money. i do not understand that logic, but i agree, most doctors nobody is missing. but i fear this system isnt just throwing out the bad staff but actually the good staff first.

Judee said:

Well, not to mention all those Long-Covid research dollars they wouldn't get if they called it ME/CFS.

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Damn!!!! Didnt think of that, probably because I don't really believe that they're spending that much on Long COVID research, and for the same reasons that they'll never recognize ME as a real illness.

Thanks for mentioning that @Judee ....

I'm just waaaaaay too cynical ....

PS .... I actually wrote this to you on Saturday at about 715 PM but when I tried to post it, was informed haughtily by the site bot that I didnt have enough privileges to post here. On my own blog. Which then disappeared.

Go know ....

I'll catch up with the other comments shortly ....

I' ve sort of noticed that two local friends who live near me, both have some type of long covid.

But they do not seem to want to discuss it, and they'd definately don't want to be affiliated with the likes of people like me, with our version.

It was sort of funny recently, when I attempted to convey to my brother, something about all this.

I said: I already HAVE long COVID.

He then asked me questions. Of course I meant: THIS IS more or less= long covid only I have never had COVID.

We have talked a bit more directly about it.

My brother asked me if my doctor would consider me disabled. (answer, YES TOTALLY). I think he thinks I made that up.

Interesting question: suggesting to me, that sometimes my illness comes with those invalidating qualities...

Rufous McKinney said:

It was sort of funny recently, when I attempted to convey to my brother, something about all this.

I said: I already HAVE long COVID.

He then asked me questions. Of course I meant: THIS IS more or less= long covid only I have never had COVID.

We have talked a bit more directly about it.

My brother asked me if my doctor would consider me disabled. (answer, YES TOTALLY). I think he thinks I made that up.

Interesting question: suggesting to me, that sometimes my illness comes with those invalidating qualities...

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you experience the effects of tolerance our culture is bragging about so much.
family seams to be some kind of special tolerant.
... but if some really dumb bullshit is running in TV and news. they have no problem to accept and believe any shit.

its not only illness, its just everything. if some outgroup suggests it, they accept it.
i am.. was.. IT specialist, and i was really good. i earned tons of money, was freelance and had a good reputable client list. when my family asks for some tech advice, i give them honest good advice... they ignore it... until some random loony in a shop or neighbours kid tells them the same.
or more often, accept the advice from a outsider , which usually is crap, then later come to let me fix it.
sometimes this is comedy gold... if you can laugh about it... but when it comes to health and survival its just sad and furiating.

Channeling Dr Seuss? I love it!

I’ll play devil’s advocate

Since CFS/ME remains a mystery , in what way does it help anyone or help explain anything to say long covid is Cfs?

But seems like plenty of downsides to doing so: pretense youve explained LC when you haven't because CFS explains nothing, inheriting baggage of a troubled biased history. I mean its bad enough cfs-ers are accused of psychiatric etiology, and the comparison may now be mistaken as dismissing a zillion more people as having psychiatric illness. Indeed the refusal to make the connection may meqn MDs are saying We are taking this seriously, we are not blowing you off.
Is the issue that tou feel sleighted? Tgat you want the status of cfs to be elevated by having it in bed with a more respectable diagnosis? I dont think we need that to benefit from anything uncovered for long covid. Indeed i thinknwe benefit more if work on it starts completely fresh.

And on a different issue, It is also far from obvious how to decide the relation between two sets of similar or overlapping or even identical symptoms For example I mentioned in part uno , the symptoms of Sjogrens, especially sone of the more recently documented symptons, sound just like ME and LC too. And for years the “great mimics” like hep
c and parvo and cmv not to mention lyme also symptom for symptom sound alot like ME. Remoembet once upon a time, ME was a doliagnos of exclusion only in event these other diseases not present precisely because it can produce simikat symptoms.

Note also when you compare symptoms, you may be picking out the simikar symptoms and ignoring any different ones- thoneven if there are t any all the other comments apply .

If I were starting from scratch, what i would do is to see what about cfs/ME causes shorter lifespans , earlier deaths and work backwards from that

I also think i cqn distinguish cfs from sjogrens but thats another issue. Have not tried to apply it to long covid

By the way, immavoiding reading peopkes accounts of long covid. Not until after i see what my new anosmic vaseline will be. Im still in the phase where a normql illness making me feel more normal, not that covid is a normal illness

YippeeKi YOW !! said:

Which will waste more money, more time, and vitiate the obvious connections between ME and previous viral infections that pave the way for it, like Epstein Barre/mononucleosis and now, COVID ....

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I witnessed the STAPH infection show back up in my husband, six days after COVID jab 2/ Pfizer.

To the emergency room he went. And no, nobody submitted that to VAERS.

Of course, thats totally unrelated!

(he had a heck of time clearing away this Staph about six years ago, from walk on a beach up in the pristeen northlands.)

vision blue said:

Since CFS/ME remains a mystery , in what way does it help anyone or help explain anything to say long covid is Cfs?

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From what I understand, a goodly percentage of people with LC are being diagnosed with ME/CFS. Not all, and indeed another percentage of people with LC do recover--it is just a LONG recovery.

So I would say that what we are seeing is that Covid sometimes leads to LC which sometimes leads to ME/CFS. It is the latter group of people, whose ME/CFS (no matter what doctors will or won't call it--we've all been there) happens to have a known and singular origin (unlike many of us old-timers who may or may not know what initiated our illness) who are being hung out to dry increasingly, just as those of us with ME/CFS with non-Covid ignition have been for....ever.

Our capacity for denial of things we fear is hard to take in because of how vast it is. The cost--and here I refer to the actual cost to the economy--is stupifying. Almost no one with the ability to address this looming disaster is willing to look. The burden placed on the medical system, such as it is, if people with LC don't just get better and/or go away is terrifying. Much easier to kick the can down the road and tell people to exercise and get over themselves!

There was so much hope in this community, albeit mingled with empathy and sorrow, at the beginning of the LC emergence. Hope that at last, with ME/CFS developing literally under their noses, the medical and public health systems would at long last take our plight and our illness seriously. To watch people with ME/CFS or its LC equivalent being thrown under the bus as we have been is also to see the flame of our hope that research, education, understanding and progress might follow from this tragic pandemic gutter and dim.

vision blue said:

I mean its bad enough cfs-ers are accused of psychiatric etiology, and the comparison may now be mistaken as dismissing a zillion more people as having psychiatric illness.

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I believe this is precisely what is happening. Although some doctors do not want to confer our diagnosis on people post COVID who meet the criteria for ME/CFS, plenty are none-the-less giving them the standard ME/CFS treatment.

And while no one really know what (if anything) differentiates the core cause of the suite of syndromes and conditions that afflict us and our compatriots, one from another, there is strong reason to believe that there is some shared etiology . Avindra Nath from the NIH talks about it here: https://covid19.nih.gov/news-and-st...might-help-others-post-viral-fatigue-ailments
He says, in small part, 'All clinical studies of long COVID patients would be relevant to ME/CFS.'

YippeeKi YOW !! said:

Which will waste more money, more time, and vitiate the obvious connections between ME and previous viral infections that pave the way for it, like Epstein Barre/mononucleosis and now, COVID ....

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In my view, allopathic medicine has become so compartmentalized that it is failing many. If your dysfunction is not limited to one bodily system or specialty, good luck getting it fully seen and healed or addressed. This strikes me as easy: post viral illnesses have a lot in common, as do some other syndromes that seem not to share origins, but do share symptoms. Why not take a bigger approach, a broader look, a more comprehensive survey of what is shared? It might just lead to some answers.

I have recently decided I really appreciate my doctor diagnosing me with Systemic Exertion Intolerance Disease.

Its just so much CLEARER to state that to somebody else as you, say , collapse in your chair at your appointment you have no business undertaking.

Rufous McKinney said:

Systemic Exertion Intolerance Disease.

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and: has anybody EVER heard of THAT? (hardly)

You will NOT be told " OH YEAH, I had that...." (and got over it, inferred, stated, etc etc)

@yoppee. Ot course i give you credit. Lots of credit. Why else would i spend so much time writing a reply.? You are right though i should not have said that about being slighted as there was nothing in your message to imply that. Ihad been trying to think of why people might want official acknowledggement that LC was CFS. Everything else i stand by.

I used to read patient anecdotes but stopped since i got covid for a variety of reasons. But that doesnt change any of my arguments because i was not arguing against there being symptom overlap.

So far , i continue to think it does more harm than good to say long covid is cfs. I have no objection to a line or two of peoples papers bringing up cfs because its bad scholarshi not to p (and more generally post viral effects). I dont think theres money wastee on reinventing the wheel because theres not much of a useful wheel there (just a spinning in place one to continue the metaphor) Hitting the reset button in this case may bring fresh insights (for long covid which we can then borrow for cfs) . If in a few years people get nowhere on long covid and its clear theyvare just starting to redo cfs blind alleys of cfs research , then at that point makes sense to merge the two fields and study together and dig out the old cfs literature for long covid too

I still think the money is in longevity. Cfs folk die younger. Why? I know theres studies on this and that woukd be starting point.

YippeeKi YOW !! said:

you just rebrand it.

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My doctor at least tries.

If I went there every month and leaned on him, and if I actually went to specialists which I still largely never do, maybe I'd ...Oh - never mind.

@YippeeKi YOW !!

In today's news:

https://www.perthnow.com.au/news/health/brain-similarities-for-long-covid-chronic-fatigue-c-10033212

Scans showed the brainstem was significantly larger in myalgic encephalomyelitis/chronic fatigue syndrome patients and long COVID patients, compared with those who did not have the same ailments, lead study author Kiran Thapaliya said.

"It also showed similar volumes of the brainstem in patients which could be the reason long COVID patients exhibit all common core symptoms of ME/CFS," Dr Thapaliya said.

they find one symptom or change in physiological, now they believe this must be the cause.
its just not working this way.
there are tons of physiological changes.

well at least it would be good as diagnostics marker for cfs... but they arent doing that either.

what are they doing?!

if this isn’t ME, well …. then I
don’t know my POTs from my PEM.

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Yet another illustration of this: It's short and the end is mostly fundraising, but the beginning looks like nothing if not ME/CFS