A WARNING for You and HOPE for Me

I’ve written so many times about my Fibromyalgia (ME)/Chronic Fatigue symptoms that they bore even me. However . . .  COVID-19 symptoms and Fibro/Chronic Fatigue symptoms have an eerily similar overlap.  Some people who have had COVID-19 are experiencing a slow, protracted recovery with chronic, unremitting exhaustion, body aches,  mental fog, strange dermatological sensations or rashes, gastrointestinal issues,  irregular heartbeats, depression . .  

“COVID-19 may produce a lot of ME/CFS-like cases. Will we be able to use them to understand ME/CFS?
A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds one of ME/CFS.  For one, it’s causing weird symptoms (loss of smell and taste, buzzing, electric, vibrating sensations, red/purple faces, purple toes, pink eye, digestive issues, nausea, dizziness, cognitive issues) that aren’t usually associated with a virus.”
“The director of infection prevention and control at Mount Sinai Hospital attributed the weird fizzing-type sensations to the immune system acting up:

Immune Responses
“Our immune cells get activated so a lot of chemicals get released throughout our body and that can present or feel like there’s some fizzing. When our immune response is acting up, people can feel different sensations… I have heard of similar experiences in the past with other illnesses”.’

My own immune system is in chronic overdrive with chronically elevated. cytokine levels.   When I first read about the COVID-19 cytokine flooding that causes organ failure with viral infections I immediately went into isolation – weeks before anyone even suggested isolation. 

THE WARNING:

“It leaves something inside you – and you never go back the way you were before.”  Everyone reading this should be worried not just of catching/surviving this viral pandemic but what might happen to their life even if they catch it and survive. Because one of the known triggers for ME/CFS is a viral illness. A huge population of ME/CFS patients got the virus Mono and never fully recovered, instead they wound up with ME/CFS.”

Charcoal on paper by judy

“Paul Garner, an infectious disease professor, and Director of the Centre for Evidence Synthesis in Global Health, and Co-ordinating Editor of the Cochrane Infectious Diseases Group, knows infections on both a personal and professional level . During his tropical infectious disease research, he came down with malaria and dengue fever, but nothing he’s encountered has compared to his bout with COVID-19.
In the British Medical Journal Garner, called post COVID-19 a: “a roller coaster of ill health, extreme emotions and utter exhaustion.”
Garner doesn’t appear to be describing post-COVID-19 illness so much as he’s describing a descent into ME/CFS. All the hallmarks are there – the post-exertional “malaise”, the delayed and mind-boggling symptom flares after little exertion, the inability to understand his limits, Garner talked about the “apparition”, a semblance of improved health that kept getting smashed as he innocently overreached.
“People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms and their unpredictable course.”

“Some of the longest-suffering Italians are finding themselves in physical and financial uncertainty, unable to shake sickness and fatigue and get back to work.”
“We have seen many cases in which people take a long, long time to recover. It’s not the sickness that lasts for 60 days, it is the convalescence. It’s a very long convalescence.” Alessandro Venturi, director of the San Matteo hospital, Pavia, Italy.”

“Another doctor noted that after all the different, initial symptoms were gone, it was the fatigue that remained. That rang bells. Early studies of the ME/CFS outbreaks came to the same conclusion: the early symptoms were often different but the fatiguing state that ultimately remained was quite consistent.”

 MY HOPE

“Because we generally, in the past, haven’t taken viruses seriously, we simply tell patients to ‘go home and rest up’. The significant fraction (which might be as high as 1-10%) of patients who do not recover normally after infection have often been marginalized and forgotten.”
This time there may simply be too many unrecovered patients for the NIH and other medical funders to ignore. 
“An unexpected element is a growing number of reports that even people with mild Covid-19 illness, who didn’t go to hospital, are experiencing long-lasting symptoms. Some people infected in February or March are still being ambushed by extreme fatigue, headaches, sudden breathlessness and problems concentrating or doing even light exercise.”
Many will probably recover, but if COVID-19 patients go the way of past Ross River virus, Coxsackie B, Giardia and SARS patients and others, a subset will remain quite ill.”

So, you ask, What’s HOPEFUL about THIS?


The Open Medicine Foundation Launches International ME/CFS COVID-19 Study
Research into Fibro (ME)/Chronic Fatigue has had few funds for  research even though there are estimated tens of millions of people in the world with that diagnosis.  
But now the entire world is focused on COVID-19. More research in a shorter period of time has been put to work on COVID-19 than ever before. With hundreds of thousands of people potentially coming down with post-infectious illnesses, there’s an opportunity to include fibro/chronic fatigue into the biggest, single medical research effort ever.”

The Open Medicine Foundation (OMF) will produce an international effort to understand how COVID-19 turns into ME/CFS. The OMF’s four-site COVID-19 study (Stanford, Harvard, Canada, Sweden) will collect body fluids, do continuous health monitoring using wearables, and collect symptom data over two years. Its genomic, metabolic, and proteomic analysis will attempt at the molecular roots of ME/CFS as it occurs.

“With the NIH otherwise occupied, Open Medicine Foundation’s COVID-19 research effort is our best chance at helping both people with ME/CFS and COVID-19 patients who are having trouble recovering. In fact, it’s the only effort going right now that seeks to directly understand and help the possibly many people, who, after surviving COVID-19, find their lives unalterably changed.”

Your Warning and My Hope:

Stay Vigiliant.  Be Safe.  Wear a Mask.  Social DIstance.  Stay Isolated if possible.  

Don’t think because you are healthy now there can not be long term consequences . . . and I’m speaking from experience.

judy

 

Click here For a list of other post COVID-19 efforts/studies that are underway and the full article

8 comments on “A WARNING for You and HOPE for Me

  1. You may know that my cousin suffered extreme epilepsy seizures in March and was admitted to a hospital for months of treatment. She was diagnosed, after weeks of physicians being stymied by her condition, as having autoimmune encephalitis. She was put into an induced coma for many weeks to control the seizures, and was finally released to her home about a month ago to continue recovery, including physical therapy and other treatment. J is 35, married and has two very young children, has been vegetarian all her life, and was a marathon runner. She seemed like the healthiest person in the world until stricken by the seizures. Though she was tested several times for Covid 19, and the tests returned negative, her family still believes it may be the underlying cause of her illness. When I came upon the following article, it suggests that she may in fact have been stricken with Covid that was not detected. I don’t know if they’ve tested for antibodies. Nevertheless, the following article is fascinating – and frightening.

    https://elemental.medium.com/coronavirus-may-be-a-blood-vessel-disease-which-explains-everything-2c4032481ab2

    I really hope that you find some relief for your fibromyalgia, Judy, because it’s caused you unrelenting pain and stress. I keep you in my prayers, Mi Shebeirach, my friend.

    Like

    • I didn’t know about your cousin. May her recovery be quick and complete. Something is going on that the medical researchers haven’t figured out . .. .yet. These stories, like your cousin, albeit, not “common” are mounting. Because of my condition and following some of the research I read heartbreaking conditions in many many younger men and women who are completely disabled in all parts of the world. And this particular COVID-19 virus seems to be insidious.
      Thank you for the link. Frightening indeed.

      Like

  2. Thanks for this, Judy. so many people seem to think the worst of this pandemic is behind us and are living life as though there had never been a pause. It scares me. I have read a few stories about people who have experienced this awful virus and the wide array of symptoms they developed. One young man, a self-described athlete in “perfect” health prior to contracting the virus, detailed the horrific pain he was in. His point was the young are not immune to the dregs of this horrific virus. He also described the very prolonged convalescence. I hope that the research will help people who may likely suffer with Fibro (ME)/Chronic Fatigue as a result of contracting Covid-19, and all who already do. Stay well. Stay safe. You’re in my prayers.

    Like

    • Carol,
      We have no clue about long term consequences of any virus, much less COVID-19. It brings to mind birth control pills when I was in my 20’s and then decades later they found the doses back then were way too high or the horrific consequences of Thalidamide on fetus. All we can do is our best at any one time in history with the knowledge we had then. And that goes for all of us with our choices and actions.
      Thank you for the prayers – I welcome them
      j.

      Liked by 1 person

      • Judy
        This is so true. It is the unknowns of this virus that really frighten me. Knowing all the missteps of the past – like Thalidomide – will help us be cautious with “cures”. At least that is my hope.

        Liked by 1 person

  3. Thanks Judy for your continued efforts to educate us. If I may quote my son, “It sucks when it takes something like COVID to get research done on an existing conditions.”
    I agree with his comment, but I’m glad that at last, they’re doing something!!

    Like

    • Kathy,
      Your son certainly doesn’t suck, he ROCKS!
      It almost always takes something to rock us to the core for change to happen. Complacency flourishes when we are comfortable.
      Thank you for taking time to comment. It’s always gratifying to know if what Peggy and I do are educating or helping.
      xxxx j

      Like

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