Glimmers of Hope: Post-COVID Syndrome Research

https://web.cvent.com/event/11825c60-cdb2-446b-adcd-c1ea9e40368f
This is NIH’s upcoming conference ( free) to discuss successful interventions and future research.

I am an RN with Long Covid and doing my own research survey.
I’m thing of starting a blog to share what has worked for me so far, all research based by NIH and Pub Med.
I called UF Integrative and couldn't get in until mid October!

What were their responses to your symptoms? I’m assuming you’ve had this Zoom already as it’s now August. Can you please share what was told to you? We are all struggling here and any information would be helpful. Thank you.

No, I got an appointment in July. Yesterday, I saw the doctor on Zoom. She referred me to longcovid.physio.
I have only briefly looked at it, but it looks like good information. I am going to start Mitoquinone to help with energy and Ubiquinone for brain fog. They are supplements you can get at Amazon. She referred me to a neurologist so I am waiting to find out the date. I asked for LDN but she wants to start with the before mentioned supplement's. Many of you guys have mentioned the effectiveness of LDN. Is it worth trying to get it?

What were their responses to your symptoms? I’m assuming you’ve had this Zoom already as it’s now August. Can you please share what was told to you? We are all struggling here and any information would be helpful. Thank you.

I'm sorry but western medicine is missing the point entirely. We need to treat the ROOT CAUSE of long-haul Covid, not just throw prescriptions at every symptom and malady. Since western medicine treats each system of the body as separate, and only treats symptoms one by one, it will be a LONG TIME coming to find any answers (if ever).

Many people have found GREAT relief from long-haul Covid by working with holistic practitioners who assess the whole body -- by greatly reducing inflammation, heavy supplementation of key nutrients, bringing the nervous system back into balance instead of hyperstimulation/overdrive (chiropractic care, vagal nerve reset). It would be nice if regular doctors were paying attention because many people have had really excellent results with these methods.

A lot of good post that capture the patient impact. When reading the article I first noticed that only Mayo patients could participate in their upcoming study. This was similar to my request to get into the NIH Long Covid study - they only wanted participants close to their facilities so being sick in Northeast Connecticut precludes me from virtually all studies because of convivence of the program. If I lived in Boston, DC or NY no problem but apparently, I was discriminated on the basis of milage. Additionally, to get into a long covid recovery you have to have a referral from your primary care doctor to get in (Apparently the requirement of the care provider - not my insurance) and I have a doctor that believes in the stick your head in the sand to see if it goes away rather than actually do anything to investigate or treat it. So many of us are sitting around imagining our lives are quickly being extinguished while the medical industry sits back and does nothing.

Is this a huge conspiracy as one poster implies? Is it a political position to hide the impact and cost of actually investigating and treating long covid because if it became public, reelection would be doubtful, or is it insurance related to keep their expenses down or finally is it the ineptness of our Medical field that prevents them from exploring and doing even the most minimal effort to acknowledge and basically suggest potential mitigation.

Has anyone out there been given even the slightest investigative testing, a placebo, or even the minimal non evasive treatment to mitigate the symptoms, much less cure them?

Covid made the top 3 "Killers List" behind Heart Atack and Cancer last year - If you were found to a potential candidate for either of the number 1 or 2 on this list - do you think your doctor would be advising you to -"lets not verify it - why don't we sit around and do nothing - I'll see you in three months - you can pay the bill at the front desk on your way out." And one wonders why we are upset.

Treatment update - my pcp eventually gave me a referral to a Neurologist Physc on Monday - can't wait ask him the same questions and see if he has a kumbaya feel good cure.

Good luck! Please let us all know what the magic cure is because I am overly physically and mentally exhausted. I don’t even know what meds work. Or if any of them do anything!

Ditto. Tho' I have learned to deal w/ some symptoms, others are too painful to ignore. It's not in my head.

Everytime someone posts a new idea to try, nonprescription& reasonable logic, I have a go at it.......desperate people do desperate things! NOT ONE THING HAS BEEN EFFECTIVE! I have a whole box full of high mg vitamins &minerals for instance.....useless.
Chronic uncontrollable inflammation has been the culprit identified by multiple worldwide researchers. KEEP UP THE RESEARCH!!!!!