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Proposal by a German doctor: Dealing with the long term consequences of the corona pandemic

Discussion in 'General ME/CFS news' started by Hoopoe, Jun 5, 2021.

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    This seems like a competent person that can communicate the issues well. ME/CFS and PEM are mentioned in the article.

    https://translate.google.com/translate?sl=de&tl=en&u=https://www.linkedin.com/pulse/der-umgang-mit-den-sp%25C3%25A4tfolgen-corona-pandemie-claudia-ellert

    Dear Sirs and Madames,

    Before the hearing in the Bundestag next Monday on the consequences of the corona pandemic, I would like to share with you some thoughts and experiences that I consider indispensable for understanding Post and Long COVID.

    Briefly about myself

    As a vascular surgeon, I fell ill with COVID19 myself in November of last year and have since suffered from some of the typical symptoms that are summarized under Long COVID. The fact that I cannot currently work in my actual job and the expertise that I have now acquired on the subject have moved me to create a contact point for long COVID patients. I managed to do this relatively quickly using existing structures through a rehabilitation sport offer in cooperation with our rehabilitation center (very healthy! At the Lahn-Dill-Kliniken in Wetzlar / Mittelhessen). For 3 weeks there have been 2 groups with 12 patients each, who meet once or twice a week.

    On the subject

    When you look at the consequences of COVID19 for patients, you are faced with 2 completely different patient groups.

    On the one hand, we are dealing with those affected by severe disease . Statistically, we are more likely to find older men with previous illnesses. Currently 10% of the COVID19 sufferers. On the other hand, there is probably a similarly large group of those affected who have a mild or moderate course behind them as part of the actual disease . This is a completely different clientele. Here we find women aged 20-50 years without previous illnesses.

    But the groups of people couldn't be more different.

    Our problem is that the terminology Long COVID lumps both groups together. We are basically dealing with 2 different diseases / entities. This becomes a problem when we try to derive uniform therapy concepts.

    1. Persistent symptoms after a severe course

    This is basically the simpler group in terms of post-primary care. We are confronted here with delayed courses after an acute illness. Established rehabilitation concepts are effective and can be applied.

    2. Long COVID after a slight course

    These patients represent a huge problem in care. It is young people of working age who are torn from their everyday lives. You have to assume that over 50% are unable to work or are only able to work to a limited extent. Over months! In current studies, the percentages of those affected by Long COVID after 2.4 or 7 months do not differ significantly.

    Therapy and current supply situation

    The fact that there is no therapeutic approach is our biggest problem in advising those affected. The clinical picture is basically well described under MECFS (Myalgic Enzaphalomyelitis / Chronic Fatigue Syndrome).

    And this is where the main problem arises in the current supply situation. Except for those affected and their immediate surroundings, this clinical picture is in no way known. It is not mentioned in medical studies. Residents have not been confronted with it so far (despite the number of patients of around 300,000 in Germany). In other words, those affected encounter nothing but incomprehension. The choice of words with exhaustion, sleeping sickness and tiredness, which is used outside of specialist circles, leads to the trivialization of the clinical picture and in no way does justice to the limitations of the illness for every person affected.

    Established treatment concepts from rehabilitation cannot be applied. There is no research (no biomarker) to prove Long COVID.

    Exercise Intolerance (PEM)

    The cardinal and key symptom of exercise intolerance (PEM) (post-exertional malaise) does not attract attention or acceptance. The majority of those affected suffer from this symptom. After minor mental or physical exertion, this leads to the worsening of the symptoms with the risk of chronification. This means that if I put patients with exercise intolerance into an established cardiac / pulmonary rehabilitation program, they will worsen clinically. If I expect patients to have a “normal” working day despite the symptoms, it will worsen clinically. With the risk of becoming chronic. (Apart from the fact that we provoke presenterism, i.e. the fact that sick people work even though they are not fully operational.Presentationalism provokes reduced productivity and, according to studies, is associated with an economic loss of around a tenth of the gross domestic product in Germany (PwC Strategy &, Germany, GmbH 2011).)

    Various consequences result from the facts listed.

    First of all, extremely important research and necessary therapy studies are needed on both clinical pictures, i.e. on the acute course but also on delayed symptoms in the sense of long COVID / postviral fatigue / MECFS. These must be located at the university.

    In addition, we just as urgently need a comprehensive, low-threshold offer for the patients who are now available. Information on the clinical picture must be disseminated within the specialist societies and in the form of guidelines that define therapeutic components in addition to diagnostic measures.

    I have not found the symptom of exercise intolerance in any existing guideline. However, this decides which therapy paths to take. About whether activating therapies are possible or medical malpractice.

    The procedure probably also decides how many additional ME / CFS sufferers we will have to deal with in the coming months and years.

    Current funding opportunities

    The funding programs initiated by the federal government are unfortunately not suitable for the current supply because they are too complicated and sluggish. We need NOW! a supply option. For those currently ill, we need outpatient offers that relieve and supplement inpatient offers.

    Professional reintegration

    We need programs for professional reintegration and measures that financially compensate for the period of reduced work ability. Otherwise we provoke the compulsion to full work activity while accepting a chronification of the suffering. I do not consider retraining measures to be very effective, as it is not possible to foresee in detail how long the complaints will last. There is also the problem that the disease is aggravated by physical as well as mental activity. It is to be feared that complex and expensive retraining programs will not lead to the desired goal.

    Our regional solution proposal

    My personal approach is our regional offer with the formation of a broad network, which depicts diagnostic and therapeutic components. Family doctors, specialists (cardiologists, pulmonologists, neurologists, angiologists, rheumatologists), physiotherapists, occupational therapists and rehabilitation clinics are all united. The aim is to disseminate information in the network as quickly as possible, to share expertise, and to coordinate treatment concepts. The whole thing is to be digitally supported in order to enable the patient to exchange experiences, to offer further training offers, to establish telemedical content, to create individualized exercise programs (balance and coordinative training) and to provide psychological support. This has the advantage that patients can also be reachedwho are unable to take part in face-to-face events due to their physical or cognitive limitations. In cooperation with the Technical University of Central Hesse, Chair of Health, Ms. Prof. Hanefeld, we are developing a digitally supported outpatient therapy concept Long COVID and hope for funding.
     
    Last edited: Jun 5, 2021
    Lisa108, Kitty, Hutan and 19 others like this.
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Kitty, Hutan, pteropus and 7 others like this.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Heartening to see a meaningful account of PEM and its significance coming out of Germany.
     
    Kitty, Hutan, pteropus and 11 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    Yes but, PEM is not 'exercise intolerance'.
     
  6. JemPD

    JemPD Senior Member (Voting Rights)

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    This looks quite good.
    Is that a translation error though, are you a German speaker Mij? Hoping someone can clarify any interpretation details.

    @TiredSam ?
     
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  7. Mij

    Mij Senior Member (Voting Rights)

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    @JemPD

    Yes, you make a good point.

    "This means that if I put patients with exercise intolerance into an established cardiac / pulmonary rehabilitation program, they will worsen clinically. If I expect patients to have a “normal” working day despite the symptoms, it will worsen clinically".

    They are also including working over their energy limit.
     
    Kitty, Hutan, pteropus and 7 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    This is 100% medicine's fault for their pervasive refusal to see the damn obvious. Long Covid was named to cover all possible health-related outcomes of Covid, it was never meant to lump them all as being one and the same, differentiation needs to be done by rigorous work and that has simply not happened yet because medicine is completely paralyzed in being unable to recognize it for what it is, a recognition that requires admitting to catastrophic failure in decades of contemptuous dismissal of chronic illness.

    The problem is not in the term, it's that medicine hasn't accomplished a damn thing beyond simply giving it a name. Yet. Seriously people are way too hesitant to criticize the profession but at some point it will have to happen. People need to be named, shamed and blamed and then serious people need to get working without being held back by myths and zealotry over magical psychology.
     
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  9. Sean

    Sean Moderator Staff Member

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    How accurate his sub-grouping is remains to be seen, but otherwise seems a pretty good piece from somebody who (now) gets the basic story.
     
    Peter Trewhitt, Kitty and Shinygleamy like this.

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