NIH RECOVER + FOIA = “they bungled it” I can’t speak to the veracity

I see Long Covid go the way of Tobacco - We stuck our heads in the ground for decades because we had a huge industry defending the damages to lung cancer due to cigarettes -many died due to this. We now have Covid-19 and subsequent Long Covid and again the Pharmaceutical, Insurance and Government are fighting the exposure of long covid mainly because of the financial risk due to their involvement. Sure, we had serious (and still do) disease in Covid and we developed a fast and cutting-edge vaccine to fight it by tricking the immune system rather than utilizing live virus to develop the new vaccine. Now we have Long covid that seems to have the characteristics of an immune problem - nerve disorder and it seems to affect tens if not hundreds of millions of people.
Now that we have the problem My PC Physician keeps telling me that because there is no cure - he can't do anything. My Covid Clinic is trying to find out what I don't have and they get insulted when I suggest they investigate my symptoms for what I do have. After 2 years of looking for what I don't have, I had my yearly physical with my PCP and he said I looked great for a 76 year old male - I replied so why do I feel like I'm dying each morning when I wake up? I've lost 75% of my strength, My replaced hip hurts so bad I can't walk more than 50 feet before having to set down, 2-years of a splitting headache both arms numb with both hands unable to pick up the simplest object and severe pain in my shoulders. Just a few of my symptoms. He reluctantly agreed to an x-ray of my neck (shoulder, arm hand symptoms) to determine neck orthopedic damage and followed up with an MRI that apparently shows both disc and nerve damage. That was 9 months ago. Since the I fought the insurance company over the MRI, My Long Covid Dr-Manager refused to look at the MRI - Not my job response, I have been battling to get a Neurologist to look at the MRI to suggest a path forward because all I get from most of my existing doctors is the old beagle in my 57 ford bobbing his head up and down with no thought behind it.
I'm not your average patient - I'm a senior Engineering - Construction Manager that has successfully delivered several $1 Billion + Projects from design to commissioning on time and under budget and I did that by understanding the process and what needed to be done and when to do it to succeed.
Long Covid is the first time I've ever seen a profession so segmented with tunnel vision that didn't want to know what the problem was and definitely didn't want to treat it.
I know one thing, there should be a defined protocol for treating Long Covid Patients. There should be a specific set of blood test to identify autoimmune issues, there should be specific MRI's to identify soft tissue damage in the nervous system and if necessary, a nuclear scan of the whole body to identify any areas of inflammation. Yes, it's probably $10K + per patient and that is bad news for those with responsibility - risk if I'm right so probably my self and a lot of other older people like myself will end up suffering and dying with Long Covid as the various industries drag their feet just like Tobacco / Lung Cancer but in today's media age it can't be covered up. Eventually, this will see the light of day just not quick enough for the current patients.

I see Long Covid go the way of Tobacco - We stuck our heads in the ground for decades because we had a huge industry defending the damages to lung cancer due to cigarettes -many died due to this. We now have Covid-19 and subsequent Long Covid and again the Pharmaceutical, Insurance and Government are fighting the exposure of long covid mainly because of the financial risk due to their involvement. Sure, we had serious (and still do) disease in Covid and we developed a fast and cutting-edge vaccine to fight it by tricking the immune system rather than utilizing live virus to develop the new vaccine. Now we have Long covid that seems to have the characteristics of an immune problem - nerve disorder and it seems to affect tens if not hundreds of millions of people.
Now that we have the problem My PC Physician keeps telling me that because there is no cure - he can't do anything. My Covid Clinic is trying to find out what I don't have and they get insulted when I suggest they investigate my symptoms for what I do have. After 2 years of looking for what I don't have, I had my yearly physical with my PCP and he said I looked great for a 76 year old male - I replied so why do I feel like I'm dying each morning when I wake up? I've lost 75% of my strength, My replaced hip hurts so bad I can't walk more than 50 feet before having to set down, 2-years of a splitting headache both arms numb with both hands unable to pick up the simplest object and severe pain in my shoulders. Just a few of my symptoms. He reluctantly agreed to an x-ray of my neck (shoulder, arm hand symptoms) to determine neck orthopedic damage and followed up with an MRI that apparently shows both disc and nerve damage. That was 9 months ago. Since the I fought the insurance company over the MRI, My Long Covid Dr-Manager refused to look at the MRI - Not my job response, I have been battling to get a Neurologist to look at the MRI to suggest a path forward because all I get from most of my existing doctors is the old beagle in my 57 ford bobbing his head up and down with no thought behind it.
I'm not your average patient - I'm a senior Engineering - Construction Manager that has successfully delivered several $1 Billion + Projects from design to commissioning on time and under budget and I did that by understanding the process and what needed to be done and when to do it to succeed.
Long Covid is the first time I've ever seen a profession so segmented with tunnel vision that didn't want to know what the problem was and definitely didn't want to treat it.
I know one thing, there should be a defined protocol for treating Long Covid Patients. There should be a specific set of blood test to identify autoimmune issues, there should be specific MRI's to identify soft tissue damage in the nervous system and if necessary, a nuclear scan of the whole body to identify any areas of inflammation. Yes, it's probably $10K + per patient and that is bad news for those with responsibility - risk if I'm right so probably my self and a lot of other older people like myself will end up suffering and dying with Long Covid as the various industries drag their feet just like Tobacco / Lung Cancer but in today's media age it can't be covered up. Eventually, this will see the light of day just not quick enough for the current patients.

This is all so discouraging. I read the attachment from Sicktimes. I fear we will all die with long Covid, perhaps not FROM long Covid. According to all my testing, I am a healthy person. But of course, I am NOT healthy.

We do not have the proper tests, or the proper treatments. My doctors cannot even prescribe anything for relief of my many symptoms. I am an invalid now, relying on my family to care for me.
I am grateful that I have their support, but my government has let me down.

"Amen" to your last paragraph!! Sorry for your situation. I'm four years into it and haven't had much luck either. I have been diagnosed with POTS but haven't found a medicine that works yet. Take Care!!

Thanks. I literally got home from a RECOVER appointment- pulmonary function test and chest CT. I “triggered” these tests and am grateful for the chest CT. I started with RECOVER out of University of Illinois Chicago 2 1/2 years ago. My lungs were normal. Last year there was a nodule and other crap. I’ll find out soon where I’m at with it all.

I caught Covid a second time and was given paxlovid. It cleared up the second infection and greatly reduced my long Covid from my first infection. I’ve still gone downhill. I found another RECOVER site and pick up my paxlovid (or placebo) to test 15 or 30 days of treatment to hypothetically kill off lingering virus.

There’s not too many options for me. The RECOVER people at the sites are passionate, educated, and kind, in my experience. The clinical person I met with today said RECOVER has been slow, and recruitment and progress have been slow. These are the people who know it’s slow because they were given plans that haven’t materialized.

If true, I hate that the Mayo bio bank isn’t fully utilized. I have literally sent them crap to analyze.

Funny how Pfizer was one of the original vaccinations and now they’re making money on paxlovid. The way the NIH, universities, etc is dependent on grants and federal funding.

An excellent neurologist at Northwestern University put me on dementia/parkinsons/brain injury meds two years ago. He said there’s no science for him to say whether I should stay on it or adjust dosage. He said no follow-up is needed until science moves forward. He’s the real deal- he put me into a ton of tests and he likes loud rock concerts. Yet he’s returning his focus to Alzheimer’s since there’s not much he can do for long Covid

I was also on Parkinson’s and Alzheimer’s drugs for awhile. I am no longer taking them. For me it was a tremendous expense and I felt no different. I see you say you have been on these drugs for two years. Have you had any improvement?

It’s all just a shot in the dark in my opinion. I’ve been treated for MANY things I don’t have. Not surprisingly, I had no improvement.
On days I just give in, and accept that I am sick, and will always be sick, I have some peace.
I guess that’s all I can hope for.