"Long COVID: We Are Here!" Webinar with Dr. Lipkin & Dr. Levine

Dakota15

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Sharing this event & panel discussion from last week that contains a fair amount of ME discussion (the Q&A part with the researchers & clinicians begins around the 39 minute mark). Features Dr. Levine, Dr. Lipkin, Dr. Oved Amitay from Solve


Some highlights:

Dr. Lipkin:"The field of ME/CFS has made enormous strides over the past several years. What we've learned is that it is not a single disease. There are many different disorders that present with similar phenomenon. The same thing is likely to be true with Long COVID.The question will be how do these all converge through the final common pathways, to result in this disorder that we receive as fatigue, cognitive dysfunction, and some of the other phenomena that you hear people describe.​
We are very concerned that in the process of investing in Long COVID, without adequate attention to ME/CFS in parallel, that opportunities to identify the triggers in Long COVID, ME/CFS, Gulf War Illness, similar kind of conditions, may be missed.What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID. And I think these fields can converge and we can enlighten one another."​
More for Lipkin: "...there are biomarkers for ME/CFS. We have had a preliminary look at some patients with Long COVID and they seem to be consistent. It's not the sort of thing I would promote at this point [2-Day CPET...?]....this is a plea for those of you who would like to see these kinds of discoveries expedited, please do access the ME/CFS resources that we have. There are NIH funded centers who would eagerly partner to sort these as rapidly as we can."​
From Dr. Levine:"I think the silver lining will be that finally we will find some recognition for ME that we've been seeking for years. We don't have a place at the table so to speak and so I'm hoping that this and other activist groups will help support and bring us more to the forefront so that we can bridge the gap and learn more about these complex diseases"​
More from Levine: "there are some emerging biomarkers that our centers have determined to be reasonably reproducible and that separate people with ME from age and gendered matched normal people. As Ian referred to, particularly in the microbiome and certain cytokine abnormalities, we've definitely found differences within the group."​
 

BrightCandle

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Has there been any news on the longest Long Haul victims anywhere in the world? I'd be curious to know....or have these patients been slowly recovering over many months?
There is very little tracking of long covid generally around the world. All we have is estimates. My friend hasn't recovered, neither have I but my impression is maybe 4/5 do recover usually within 8-12 weeks, past that point it is a lot less likely.
 

hapl808

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And again the problem is that without biomarkers, how do we track any of it? The symptom pathology, like ME/CFS (which I personally think is in the same bucket), is so variable and can come from other causes (like EBV, physical injury, unknown etiology) that designing a 'study' with proper controls becomes incredibly difficult. I hope they'll manage to do it, but I'm not expecting anything.
 

consuegra

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Lipkin - "What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID."

And yet Lipkin and many others have ignored or dismissed the enterovirus association to ME. The quickest route to perhaps finding a real connection would be to pick up and continue the research done years ago in the UK.

Chris
 

heapsreal

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Has there been any news on the longest Long Haul victims anywhere in the world? I'd be curious to know....or have these patients been slowly recovering over many months?

A biomarker would be something we've been seeking for years. Yours, Lenora.
Theres biomarkers for cfsme but they wont/dont use them. Ive heard experts say about some of these markers just arent diagnostic as they can happen in other conditions. But thats why they call it a biomarker and not a diagnostic marker.

In my opinion they could use the current criteria and add the 2 day exercise test (where applicable) , nk function test, cd8 T cell function test, cytokine studies, brain scans etc. Secondary test for the usual viruses that reactivate. Im sure there will be a group of covid long haulers who will have ebv issues etc as their own immune system wont be able to keep it in check.

I dont understand why they dont use these markers as they do this in many other diseases like ms and other autoimmune conditions. Maybe a conspiracy theory but the more generalized they can make the illness, the more likely they can muddy the waters. I think this comes from the psychs who want to get their hands on cfsme and cbt us to death.
 

junkcrap50

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More for Lipkin: "...there are biomarkers for ME/CFS. We have had a preliminary look at some patients with Long COVID and they seem to be consistent. It's not the sort of thing I would promote at this point [2-Day CPET...?]....this is a plea for those of you who would like to see these kinds of discoveries expedited, please do access the ME/CFS resources that we have. There are NIH funded centers who would eagerly partner to sort these as rapidly as we can."
Even though Lipkin has been a disappointment in ME/CFS research & finding a cause & cure, it's a blessing that he had been involve in ME/CFS for a while before Long Covid - even if he wasn't a major player and treated it as an side interest. He lends a lot of credibility to ME/CFS as a real disease nd an advocate for previous ME/CFS research.

I'm also happy that he himself has/had Long Covid, even though he has improved significantly. Last I heard he isn't back to 100% yet, but ~90%. So I don't think he has ME/CFS (or at least wouldn't descibe himself that way), unless having some symptoms in common makes him a very mild case. He and other researchers had to experience the symptoms firsthand to see how painful and serious it is.
 

heapsreal

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Even though Lipkin has been a disappointment in ME/CFS research & finding a cause & cure, it's a blessing that he had been involve in ME/CFS for a while before Long Covid - even if he wasn't a major player and treated it as an side interest. He lends a lot of credibility to ME/CFS as a real disease nd an advocate for previous ME/CFS research.

I'm also happy that he himself has/had Long Covid, even though he has improved significantly. Last I heard he isn't back to 100% yet, but ~90%. So I don't think he has ME/CFS (or at least wouldn't descibe himself that way), unless having some symptoms in common makes him a very mild case. He and other researchers had to experience the symptoms firsthand to see how painful and serious it is.
When you look at some of the big name researchers in mecfs, they've all had a very close experience with it. Some actually had cfs or their wife or children or involved in an outbreak of cfsme.

We need to infect more researchers but in a way that they are severe for 3 months and then mild cfs, so then they will be motivated and take it seriously, researching cfsme.🤔
 

junkcrap50

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We need to infect more researchers but in a way that they are severe for 3 months and then mild cfs, so then they will be motivated and take it seriously, researching cfsme.🤔
You're right. That's almost exactly what's happening with Long Covid. Getting "severe" (according to them) and then improving, but not entirely, after 3-9 months. Actually, PhD scientist researchers getting Long Covid, even if they're not in the field of medicine & biochemistry, has been the biggest promotion of ME/CFS. Everyone thought if only a celebrity or politician got ME/CFS, then we'd get attention and funding. But, I don't think that'd move the needle as much as these researchers have. Other non-LC researchers take their peers seriously. It's funny how all these establishment, PhD's are persuing supplements, hyperbaric, MCAS meds, alternative treatments, etc. as soon as they get sick, but pooh-poohed them before.

(I'm basing this impression on social media posts & interviews of these PhDs bringing attention to their Long Covid. Lots on twitter.)
 
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The FLCCC have developed a protocol for treating long haulers. Below is their rational for their protocol that includes Fluvoxamine, Ivermectin, cortico steroid therapy, antihistamines and low dose Naltrexone.

https://covid19criticalcare.com/covid-19-protocols/i-recover-protocol/

I-RECOVER Management Protocol for Long Haul COVID-19 Syndrome (LHCS)



The Long Haul COVID-19 Syndrome (LHCS) is an often debilitating syndrome characterized by a multitude of symptoms such as prolonged malaise, headaches, generalized fatigue, sleep difficulties, smell disorder, decreased appetite, painful joints, dyspnea, chest pain and cognitive dysfunction. The incidence of symptoms after COVID-19 varies from as low as 10% to as high as 80%. LHCS is not only seen after the COVID-19 infection but it is being observed in some people that have received vaccines (likely due to monocyte activation by the spike protein from the vaccine). A puzzling feature of the LHCS syndrome is that it is not predicted by initial disease severity; post-COVID-19 frequently affects mild-to-moderate cases and younger adults that did not require respiratory support or intensive care.

The symptom set of LHCS in the majority of cases is very similar to the chronic inflammatory response syndrome (CIRS)/myalgic encephalomyelitis/chronic fatigue syndrome, although in LHCS, symptoms tend to improve slowly in the majority of the cases. Furthermore, the similarity between the mast cell activation syndrome and LHCS has been observed, and many consider post-COVID-19 to be a variant of the mast cell activation syndrome. LHCS is highly heterogenous and likely results from a variety of pathogenetic mechanisms. Furthermore, it is likely that delayed treatment (with ivermectin) in the early symptomatic phase will result in a high viral load, which increases the risk and severity of LHCS.
Although numerous reports describe the epidemiology and clinical features of LHCS, studies evaluating treatment options are glaringly sparse. Indeed, the NICE guideline for managing the long-term effects of COVID-19 provide no specific pharmacologic treatment recommendations.

Given the lack of available treatment recommendations in the setting of large numbers of patients suffering with this disorder globally, the FLCCC developed the I-RECOVER protocol in collaboration with a number of expert clinicians including Dr. Mobeen Syed, Dr. Ram Yogendra, Dr. Bruce Patterson, and Dr. Tina Peers. Although our varied yet often overlapping treatment approaches were initially empiric, while based on both preliminary investigations into and prevailing theoretical pathophysiologic mechanisms of LHCS, the consistently positive clinical responses observed, often profound and sustained, led the collaboration to form the consensus protocol below. As with all FLCCC protocols, we must emphasize that multiple aspects of the protocol may change as scientific data and clinical experience in this condition evolve, thus it is important to check back frequently or join the FLCCC Alliance to receive notification of any protocol changes.