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

Discussion in 'Long Covid news' started by Hip, Jan 21, 2020.

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  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Science The road to addressing Long Covid by Nisreen A. Alwan

    ME is mentioned twice:

    Long-term sequelae have been reported with other viral infections. Most relevant are other coronavirus diseases, with a quarter to a third of those with SARS and Middle East respiratory syndrome (MERS) having lingering lung function abnormalities, reduced exercise capacity, and psychological manifestations (9). Autonomic dysfunction after viral illness, which has been observed in Long Covid but is also a feature of similar conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), can cause disabling syndromes including postural orthostatic tachycardia syndrome (POTS). Exact case definitions of what is collectively termed “postviral syndrome” are needed. Long Covid research may also be applicable to a wider range of chronic illnesses, including ME/CFS, which similarly lack adequate understanding and recognition.

    ...

    Rigorous research to understand the mechanisms, risk factors, prognosis, and subgroup characteristics, and to identify potential therapeutics for Long Covid, is desperately needed. Other chronic conditions, such as ME/CFS, fibromyalgia, and some connective tissue disorders, are largely under-researched in terms of underlying mechanisms, diagnostics, therapeutics, and management options. The understanding of Long Covid offers an opportunity to pave the way toward better outcomes for all patients experiencing similar conditions.
     
    Hutan, Nightsong, ahimsa and 12 others like this.
  2. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    https://twitter.com/user/status/1420815410979655685


    Eric Topol (Wikipedia):
     
    Hutan, EzzieD, SNT Gatchaman and 6 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Stanford Medicine - News Center
    Stanford Medicine opens clinic for patients struggling with long COVID - by Tracie White

    quote:
    Clinicians are taking cues from what is known about other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome, a condition that often manifests after a viral infection and also has no known cause or standardized treatment, said Aruna Subramanian, MD, clinical professor of infectious disease at Stanford, who co-directs the ME/CFS Clinic. Long-COVID and ME/CFS symptoms are often similar and can include headaches and brain fog, as well as profound fatigue and something called post-exertional malaise — the worsening of symptoms after even minor physical or mental exertion.

    “There seems to be a lot of overlap,” Subramanian said. “Working in the ME/CFS clinic, we see people who may have had other viral triggers, got sick … and their lives changed.”
     
    Hutan, Michelle, Helene and 8 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    SBS News 'Wise to be thinking now': Calls for Australia to consider the burden of long COVID

    quote:
    "We need to recognise that COVID-19 is not like the flu. There are long-term implications, the recovery journey can be a long one and it can impact your quality of life even if you are not hospitalised," he said.

    'Long COVID' has also cast a spotlight on the experience of those with myalgic encephalitis, often referred to as chronic fatigue syndrome (ME/CFS), with some researchers and patients noting a similarity of some symptoms.

    Professor Martin Hensher, from Deakin University's Institute for Health Transformation, said the most direct link is common symptoms of fatigue and debilitation, and associated mental health impacts.

    He said patients with 'long COVID', like those with ME/CFS, are reporting concerns health professionals are not taking their conditions seriously.

    "Certainly, people who suffer with ME/CFS often report they're shuffled off with the implication it's all in their minds," he told SBS News.

    'What we are seeing - not necessarily in Australia because our numbers of COVID-19 patients are so low, but certainly in the UK and Europe - is that many people with 'long COVID" are reporting they are having quite similar experiences.

    "They believe they are quite debilitated and disabled by this, but their GPs and sometimes specialists are not taking them seriously, and are often limited in what they can do for them."

    Professor Hensher said learning how to support 'long COVID' patients will be a "difficult yet important challenge" that can draw from the experiences of the ME/CFS community.
     
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Good article. Although I dispute the premise as too little too late. It would have been wise to be thinking about this 16 months ago when it became obvious, to us anyway. Today it's just barely catching up having having missed all the warning signs and failed to follow the evidence.

    Wisdom is not acting far after even laypeople have been screaming that this is an issue. It's being able to exercise foresight and plan accordingly. I distinctly remember Koroshetz saying, I think it was in April of 2020, that they should plan for this. They didn't. That would have been wise. Instead medicine went with utterly foolish, playing catch far too late is about as unwise as it gets, especially as it will obviously only happen being dragged kicking and screaming into doing the obvious.

    Pet peeve but wisdom means something and this ain't it. Doing the bare minimum very late into it is a clear sign of systemic failure.
     
    Mithriel, Sean, Amw66 and 4 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    Last edited: Aug 2, 2021
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    New film from Gez Medinger titled: The Psychologisation if Illness - Why Long Covid (and ME/CFS) Are Not 'Just Anxiety'

    Panel consists of:
    Professor Brian Hughes, Psychology - National University of Ireland
    Dr Nina Muirhead - Specialist Surgeon, Dermatology, ME sufferer
    Sarah Graham - Author, founder of Hysterical Women blog
    Dr Shaun Qureshi - Specialist Registrar, Palliative Medicine & Long Hauler
    Dr Ian Frayling - Consultant in Genetic Pathology, Long Hauler

    https://www.youtube.com/watch?v=AKVWQljUJBQ




    ETA: Just watched it now and highly recommend it!! Prof. Hughes and Dr. Muirhead were as always excellent, but the whole panel was really good. Hope this reaches many people.

    Copied to Psychologising thread
     
    Last edited by a moderator: Dec 7, 2022
    boolybooly, JaneL, Mithriel and 13 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    From the American Society of Pediatrics, by Peter Rowe. Helps to have someone who knows what they're talking about. I've seen more concern lately over the impact on children. Saw a video being shared a lot last night, a pediatrician calling delta the worst-case scenario. Not enough to make a difference yet, some countries are still dedicated to herd stupidity.

    I've seen some reports also of what difference high adult vaccination rates, that there could be as many as 10-12x as many childhood cases in some states with high adult vaccination rates compared to those with low. Vaccinated adults protect unvaccinated children. This is especially important if the policy remains, probably right, to restrict vaccines to 12+.


    Long-Haul COVID-19 in Children and Teens
    https://www.healthychildren.org/Eng...Long-Haul-COVID-19-in-Children-and-Teens.aspx


    Mentions ME and POTS. Most of the details are otherwise familiar.

    Myalgic encephalomyelitis/chronic fatigue syndrome

    Your child might be one of the people who weren't hospitalized that have reported the same symptoms as those found in a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (This used to be referred to as simply chronic fatigue syndrome.)

    They may have severe fatigue, lightheadedness, not feel rested after sleeping, and experience something known as post-exertional malaise (PEM). Symptoms of PEM happen after you do more physical or mental activity than normal, or stand for a long time. Afterward, this can result in days of increased symptoms such as worse fatigue, headaches, and light and sound sensitivity. This is similar to what you'd experience after a concussion.

    Brain fog is another extremely common symptom of both ME/CFS and long-haul COVID. In children and adolescents, this can look like they suddenly developed attention-deficit/hyperactivity disorder (ADHD) without the hyperactivity.
     
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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Posting here because they are also interested in hearing from people already living with chronic illness. I often see this show referenced as being pretty good and serious. It's on NPR, national radio in the US.

    https://twitter.com/user/status/1422647766560485380
     
    Amw66, ahimsa, Hutan and 3 others like this.
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Part 2 is out. From the description:

    This is part 2 of our feature on the psychologisation of chronic illness, specifically Long Covid and ME/CFS. In this film we’ll be covering the tricky topic of sticking up for yourself in the face of healthcare providers trying to tell you it’s all in your head - or at least 'just' anxiety or stress.

    This is the panel, interviewed by Dr Asad Khan and myself:

    Professor Brian Hughes, Psychology - National University of Ireland
    Dr Nina Muirhead - Specialist Surgeon, Dermatology, ME sufferer
    Sarah Graham - Author, founder of Hysterical Women blog
    Dr Shaun Qureshi - Specialist Registrar, Palliative Medicine & Long Hauler
    Dr Ian Frayling - Consultant in Genetic Pathology, Long Hauler

    CHAPTERS:
    0:00 Introduction
    2:20 How Did We Get Here?
    5:32 Why Medicine jumps to GET/CBT
    8:12 History Repeating Itself
    9:45 Positive Future - Paradigm Shift?
    14:33 What Can Patients Do?
    21:32 Conclusion


    https://www.youtube.com/watch?v=GzGr81wnwms


     
  11. Denise

    Denise Senior Member (Voting Rights)

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    Amw66, Michelle, alktipping and 2 others like this.
  12. Denise

    Denise Senior Member (Voting Rights)

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    Rowe says this is actually a summary of an interview with him done by the American Academy of Pediatrics (AAP).

    Comparing and contrasting this summary with the AAP guidance
    https://services.aap.org/en/news-ro...caring-for-children-after-covid-19-infection/
    on LongCOVID in kids is "interesting", shall we say.... (among other things there is no suggestion of the possibility of OI or PEM and how PEM might impact other treatment....)
     
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    ahimsa, Michelle, Dolphin and 7 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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  15. Roy S

    Roy S Senior Member (Voting Rights)

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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Sean, SNT Gatchaman, Michelle and 3 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

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    Neurological Manifestations of COVID

    https://sciencebasedmedicine.org/neurological-manifestations-of-covid/


    Odd framing on this:

    Yet another study found that 55% of hospitalized COVID patient had a co-infection with the Epstein-Barr virus (EBV), the virus that causes chronic fatigue syndrome in some patients. This may be due to an opportunistic reactivation of the dormant virus. It may also be partially responsible for the chronic fatigue many patients with long COVID experience. But further it reflects how much about COVID we still don’t understand – this is a complex and serious infection, and the more rocks we turn over, the more we are finding about its effects.​

    Emphasis on the virus. Otherwise a pretty good article, just not very informed of the context.
     
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That seems an ill-informed comment on various sounds. The whole piece seems scattershot to me. A lot of numbers and not much nuance.
     
  20. MeSci

    MeSci Senior Member (Voting Rights)

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    I didn't see or hear any reference to post-COVID patients having lung problems, whereas most people referring to them mention this as an important symptom.
     
    alktipping likes this.
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