News about Long Covid including its relationship to ME/CFS 2020 to 2021

I appreciate Simon and his support, but he doesn't understand PEM and using it as a general term- PEM does not subside for pwME.

I want to specifically highlight a tweet from his thread above:

 

Studies that have followed adults after infection e.g. Dubbo (EBV/Ross River virus/Q-fever) and adolescents e.g. Chicago (Katz/Jason) have found that many who satisfied Fukuda criteria for CFS at 6 months didn’t at 24 months.

 

Last week DZB endorsed the Mayo Clinic’s graded exercise program.

 

Great interview with Jamie Seltzer

Society to Improve Diagnosis in Medicine Understanding ME/CFS and Long COVID as Post-Viral Conditions

Quote:

The experience of patients whose COVID-19 symptoms persist for four weeks or more—Long COVID or post-COVID syndrome—has led to renewed interest in myalgic encephalomyelitis/chronic fatigue syndrome (MF/CFS), an illness with symptoms similar to Long COVID. Both conditions involve uncertainty regarding diagnosis, treatment, and prognosis and are subject to ongoing research. Organizations worldwide, including the National Institutes of Health in the United States, are exploring the possible connections between Long COVID, ME/CFS, and other similar conditions.

To better understand ME/CFS and its connection to Long COVID, Susan Carr, Senior Writer for ImproveDx, recently talked with Jaime Seltzer. In a plenary session at the 14th annual Diagnostic Error in Medicine conference, Seltzer explored the similarities and differences between Long COVID, ME/CFS, and other conditions that a viral infection may trigger. Seltzer, diagnosed with ME/CFS in 2015, is Director of Scientific and Medical Outreach at #MEAction, an international nonprofit focused on education, research, and advocacy for people with ME/CFS. She also consults on several research projects at Stanford University, including some with Professor Ronald Davis, PhD, director of the Stanford Genome Technology Center and ME/CFS researcher, whose son, Whitney, is severely ill with ME/CFS.

 

Posting mostly because it seems to refer to a research program that will waste money researching something poorly. Reaching 2 years into this and these geniuses seem to think that pwLC aren't already self-managing and if anything useful came out of it it would have been obvious. Or fail to understand that they are self-managing because medicine has nothing useful to offer, something that somehow hardly anyone is angry about.

No details but basing on precedent, it will be poor and conclude vague things of no use.


Long COVID and self-management
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)02798-7/fulltext

Self-management of symptoms in the long term is often costly, with some individuals using a substantial proportion of their income, which threatens to widen existing health inequalities. Further inequalities include geographical disparities in access to clinics for long COVID, access to private health care, and health literacy.

Research is needed to understand the self-management practices that are being used to manage long COVID symptoms; factors influencing their uptake; and the benefits, harms, and costs. There is also a need to assess the potential harmful effects of polypharmacy and drug–drug interactions in these individuals. The Therapies for Long COVID (TLC) Study (ISRCTN15674970) will begin to explore self-management practices through a survey of people with long COVID. This study aims to be a first step towards understanding this important and under-researched public health issue.​

It's funny that this article has a pejorative framing of patients seeking help on social media when it's the only place most pwLC did find help, help that completely contradicted the dominant narrative from medicine. And most likely the self-management will take form of... CBT, or whatever. Because presenting the problem as the solution to the problem is apparently normal and good for some people.

 

Governments insurance companies and even publicly paid medical professionals are hoping every person with a chronic condition will stop bothering them . so of course they want to perpetuate the idea that patients can self manage their conditions . In reality of course patients cannot because of the power that the medical profession has in justifying a patients supposed entitlement to the benefits system . try telling the d w p that the reason you have such limited evidence for your incapacitating disease is because of the drive to make patients disappear through so called self management /ableism .I am aware some diseases have systems in place for self management diabetes for instance but that still comes with regular monitoring and medical in put .

 

The long-term neurologic consequences of COVID-19

"Studies have shown similarities of long COVID symptoms with those observed in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

"Unfortunately, like long COVID, ME/CFS too is poorly understood and lacks effective disease-modifying therapies (DMTs), and more research into Long Covid could also be advantageous for ME/CFS patients"

 

I've been taking part in the ONS (Office for National Statistics) Covid study involving both a swab test for Covid-19 and a blood test for anti-bodies to the virus for the last 18 months. This involves a monthly visit from them to collect the samples and ask a multitude of questions about social contacts and symptoms etc. But today for the first time I was asked the question "Do you think you are suffering from Long Covid?". So it looks like they are beginning to collect data about LC to add to the existing data. Let's hope they continue to collect this data for some time to come.

 

UCSF Magazine: The Long Haul

"An all-hands-on-deck research effort gave UCSF scientists early insight into long COVID. It also showed patients that they weren’t in the fight alone."

"The sudden scientific interest in viruses due to the pandemic could also shed light on other illnesses possibly triggered by viral infections, such as myalgic encephalomyelitis (formerly called chronic fatigue syndrome)."

 

https://twitter.com/user/status/1485718419135733769

 

THE ENDLESS ROAD OF LONG COVID
WEDNESDAY, JANUARY 12, 2022

15 months after contracting Covid, 46-year-old Linda Dalton from Piltown has never regained her quality of life. Dymphna Nugent reports…

https://waterford-news.ie/2022/01/12/the-endless-road-of-long-covid/

 

Long Covid: doctors find 'antibody signature' for patients most at risk

Blood tests on the participants showed that those who developed long Covid – also known as post-acute Covid-19 syndrome (Pacs) – tended to have low levels of the antibodies IgM and IgG3. When Covid strikes, IgM ramps up rapidly, while IgG antibodies rise later and provide longer-term protection.

Dr David Strain, a clinical senior lecturer at the University of Exeter medical school and the British Medical Association’s lead on long Covid, said the study was a step towards better understanding long Covid. The antibody signature identified by the Swiss researchers was similar to that seen in myalgic encephalomyelitis, or ME, he said, a condition that affects a quarter of a million people across the UK. “Further comparisons between these diseases may allow mutual benefit and cross-pollination of ideas as the learnings from each benefit the other,” he said.


https://www.theguardian.com/society/2022/jan/25/doctors-find-antibody-signature-long-covid


IgG3 also mentioned in this ME/CFS study
https://www.s4me.info/threads/evalu...e-syndrome-2021-lutz-et-al.22417/#post-374646

A total of 17.6% of the ME/CFS patients had an unclassified antibody deficiency, with IgG3 and IgG4 subclass deficiencies as the most common phenotypes.

 

Washington Post: CDC is asked to release race and gender data on long covid

“People suffering from Long covid have been ignored and overlooked for far too long. Collecting and publishing robust, disaggregated demographic data will help us better understand this illness and ensure that we are targeting lifesaving resources to those who need them most,” Rep. Ayanna Pressley (D-Mass.), who co-signed the letter Tuesday to the CDC, said in an emailed statement. “We’re calling on the CDC to publicly report this data because that which gets measured gets done — and we can’t have an equitable recovery from this pandemic without it.”

"Health-care providers say governments and health systems don’t have solid information on how many people are plagued by various combinations of fatigue, pain, racing heartbeat, spiking blood pressure, brain fog, shortness of breath, gastrointestinal disorders and other lingering problems months or even a year or more after their initial infection."

 

Something similar was found in Hungary too a few months ago, although using a shorter time frame. And they also mentioned the similarities with ME/CFS. I posted it here: Severe Fatigue and Memory Impairment Are Associated with Lower Serum Level of Anti-SARS-CoV-2 Antibodies in pw Post-COVID (...), 2021, Molnar et al

Edit: This would also be a good explanation for that terrible study that was trying to prove that covid long haulers didn't even really have covid.

 

Same as post #5410 above, but always good to provide feedback to politicians when they take initiatives like this.

https://twitter.com/user/status/1486030718685925376

 

(also not sure if posted)

NYT: "New Research Hints at 4 Factors That May Increase Chances of Long Covid"

Paywall work-around: https://archive.fo/fkYXd

"That some patients had reactivated Epstein-Barr virus also made sense, Dr. Nath said, because other diseases have reawakened that virus, and its reactivation has been linked to conditions like chronic fatigue syndrome, which some cases of long Covid resemble, and multiple sclerosis. Dr. Deeks said it might be possible to give antivirals or immunotherapy to patients with reactivated Epstein-Barr virus."

 

Here is the study:

https://www.cell.com/cell/fulltext/S0092-8674(22)00072-1

 

What antivirals would that be? From what I understand there are non to target EBV.

 

You can clear EBV with rituximab but I am a bit doubtful about the comments from Nath and Deeks. I am not aware of good evidence for reactivation of EBV with either ME or MS.