TWiV 680: Long-term COVID and ME/CFS

November 12, 2020

Mady, Fiona, and David join TWiV to discuss patients with long-term COVID and similarities and differences with ME/CFS.

Hosts: Vincent Racaniello, Rich Condit, and Brianne Barker

Guests: Mady Hornig, Fiona Lowenstein, and David Tuller

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Intro music is by Ronald Jenkees

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12 comments on “TWiV 680: Long-term COVID and ME/CFS

  1. Janet Samson Nov 12, 2020

    Very interesting and timely. As a Canadian I am advocating for provincial registries to follow these Long Term COVID patients. We have so much to learn from this cohort. Fiona’s reporting of a recurrence of symptoms with her menstrual cycle points to a possible hormonal connection. Brianne: Is there a link between hormones and immunity?

    • profvrr Nov 12, 2020

      Most certainly. Differences in infectious disease between males and females, for example, track to hormones which influence immune responses as well as other physiology.

  2. GET/CBT is not a fundamental or serious path for patients with irreversible organ damage nor will it help compromised adaptive immune response. That insurance and mainstream practitioners go this route so early in the science of LT CoVid19 is alarming. ME/CFS has been fighting this battle for awhile evidently and now some would pull in long haulers. Not good.

    I have much to learn still as apparently do many others. Immunology is so complex as to allow simple concepts of mind to explain the many broken systemic outcomes and symptoms.

    If scientists would just remove the concept of ‘Mind’ from their models and focus on ‘Brain’ centered models – I would suggest these misdirected controversies might just lift a bit. We all need to replace mind with brain wherever possible. Most times it works. In this case it removes a pressure that you can out think immune dysfunction. I digress and perhaps distract but it is true and frustrating. The concept of Mind is not helpful, has no basis in science and is long overdue for removal from culture and science (as was/is the concept of a soul.) Might have lost a few people there … oh well.

    This is not to say CBT doesn’t work for psychological disorders… it is the only thing that does in many cases. CoVid19 is not that case.

    Pretty sure I understand the issues here but I will have to read on. The fact that Placebo and Nocebo effects can be so great (skewing data by 30+%) clouds any finding based on symptom reports and tracking. If that is where CBT practitioners are finding traction – they are not helping.

    I’m trying to understand this. This helps. Thanks.


  3. Jo Bowyer Nov 12, 2020

    This episode exceeded expectations, with the added bonus that complex pain got a mention. I was hoping that obesity (and chronic systemic inflammation) might be flagged up as a possible sequel to ME/CFS in those unable to take their usual amount of exercise, and for it’s role as a complicating factor in SARS-CoV-2.

  4. Jennifer Nov 12, 2020

    I’m looking for transcripts of your podcasts? do they exist?

  5. Richard J Bookman Nov 12, 2020

    Great episode….one of your best.

    Question for Dr. Hornig: Any correlation between SARS-CoV-2 mutations or strains and occurrence of LTC-19?
    And then, what about the genetics of those who present with LTC-19?

  6. Janet Wildeboer Nov 13, 2020

    This has been very interesting and I have read papers from David Tuller about ME/CFS. Thank You all for this information

  7. Paul Conway Nov 19, 2020

    LT Covid patients need support groups. They could model them on the support groups for rare autoimmune disease patients (GCA, AAV, SLE, etc), who are used to long-term fatigue, and typically very pro-active in researching their diseases and attending talks by medical professionals (consultants and researchers).

    Rare implies insufficient drug trials due to cost, and drugs re-purposed from other treatments, used off-label by consultants, eg Azathioprine, Methotrexate, Rituximab, etc.

  8. Farrah Kashef Jan 20, 2021

    Very interesting discussion. Thank you all.
    @ Mary Hornig & @ Fiona Lowenstein , I really enjoyed this episode and learned a lot. I contracted COVID early March of 2020. I was in and out of hospital for two months because I had a sever case of virus. I also experienced a lot of long term side effects such as shortness of breath, feeling fatigue, panic attacks, etc. I met with Dr John F. Wong @Moraga Biotechnology Corporation to help me get better and it was a life changing experience. I saw vast improvement in my healing process and well-being. Thanks to Dr Wong, I was able to make great strides with COVID and getting my life back to normal again.