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

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If covid is here to stay, the long covid is until we solve it, that and other post viral conditions.

In February the JCVI said that the likely endpoint for the vaccine programme was endemicity (.26 in the minutes, screenshot attached) and that preventing severe disease is the goal.

I get the impression that the medical profession don't consider severe fatigue to be severe disease and JCVI probably mean they want want prevent hospitalisation but have not put a thought thought preventing long term morbidity. Maybe they should start specifying that so that it's undeniable.
 

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I'm not sure if this is related to long covid but thought this tweet was interesting. It is refering to data from the UK labour force survey and is pointing out a rise of
about 150,000 people who are economically inactive due to long term health problems (from dec-feb 2020 to July-Sept 2021. This could be a long covid effect (or probably multiple effects)

 
Understanding Long COVID: The Unseen Public Health Crisis
November 19 @ 2:00 pm - 3:00 pm
https://www.hsph.harvard.edu/event/understanding-long-covid-the-unseen-public-health-crisis/

Many familiar names:

Introduction

Michelle Williams, Dean of the Faculty, Harvard T.H. Chan School of Public Health; Angelopoulos Professor in Public Health and International Development, Harvard T.H. Chan School of Public Health and Harvard Kennedy School (@HarvardChanDean)


Panelists

Hannah Davis, Founder, Patient-Led Research Collaborative (@ahandvanish)

Wes Ely, Co-Director, Critical Illness, Brain Dysfunction and Survivorship Center, Vanderbilt University (@WesElyMD)

Gary Gibbons, Director, National Heart, Lung, and Blood Institute
Kavita Patel, Nonresident Fellow, Brookings Institution (@kavitapmd)

Steven Phillips, Vice President, Science and Strategy, COVID Collaborative
Moderator

Fiona Lowenstein, Journalist and Speaker; Founder, Body Politic (@fi_lowenstein)​
 
It's a genuine fact that the word has been so thoroughly distorted of all meaning that it's effectively useless going forward. It's not something that can be improved, it would take too long and be too confusing, not even counting how many would simply refuse to adapt. The psychiatrists who cried fatigue keep crying it but since they call everything fatigue it doesn't mean anything anymore and the wolf has just eaten millions of lives while no one was looking.

 
I'm not sure where to ask this question, so if this isn't the right place, please feel free to move. My husband has just been diagnosed with Long Covid. But she asked him should she refer him to the ME/CFS clinic or the long covid clinic. She suggested the CFS clinic would give him more tests and a chance to get better whereas the Covid clinic is just about managing the condition. He said because he can already 'manage' it, the CFS clinic is fine as he wants to get better. Does it matter which he is referred to does anyone know? Sounds a bit fishy as if he has long covid, would expect him to be transferred to long covid clinic? Thanks.
 
I think if I had long covid I would want referral to a long covid clinic at least at first so any pathologies due specifically to the Covid virus can be checked for including organ damage. If someone has already been fully checked out for that and nothing found, then all you can get from an ME clinic would be finding out whether the additional diagnosis of ME/CFS fits. If the individual already knows how to manage ME symptoms, there's not likely to be any more a UK ME clinic would offer, unless they have medical staff who can prescribe suitably for some symptoms such as pain an sleep, and if the clinic offers help with dealing with employers, benefits etc. There are no proven treatments for either ME or long Covid as far as I know.
That all depends of course on the long covid clinic having the medical expertise to do the testing for organ damage with scans etc. If it's just staffed by a therapist giving management advice, its not going to be much use.
 
Tara Green said:
I'm not sure where to ask this question, so if this isn't the right place, please feel free to move. My husband has just been diagnosed with Long Covid. But she asked him should she refer him to the ME/CFS clinic or the long covid clinic. She suggested the CFS clinic would give him more tests and a chance to get better whereas the Covid clinic is just about managing the condition. He said because he can already 'manage' it, the CFS clinic is fine as he wants to get better. Does it matter which he is referred to does anyone know? Sounds a bit fishy as if he has long covid, would expect him to be transferred to long covid clinic? Thanks.
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Surprised at the suggestion the CFS clinic would do any tests at all I don’t think that’s the norm. Unless they count the questionnaires as tests. Maybe they got it the wrong way round.
 
NelliePledge said:
Surprised at the suggestion the CFS clinic would do any tests at all I don’t think that’s the norm. Unless they count the questionnaires as tests. Maybe they got it the wrong way round.
Click to expand...

I thought that. Now sent request through stating preference of covid clinic so hopefully he can check that out first and then to a ME/CFS clinic if needed, if GP permits. Thanks.
 
Trish said:
I think if I had long covid I would want referral to a long covid clinic at least at first so any pathologies due specifically to the Covid virus can be checked for including organ damage. If someone has already been fully checked out for that and nothing found, then all you can get from an ME clinic would be finding out whether the additional diagnosis of ME/CFS fits. If the individual already knows how to manage ME symptoms, there's not likely to be any more a UK ME clinic would offer, unless they have medical staff who can prescribe suitably for some symptoms such as pain an sleep, and if the clinic offers help with dealing with employers, benefits etc. There are no proven treatments for either ME or long Covid as far as I know.
That all depends of course on the long covid clinic having the medical expertise to do the testing for organ damage with scans etc. If it's just staffed by a therapist giving management advice, its not going to be much use.
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Thanks, Trish. This is our thinking too, so have asked for a referral to the Long Covid clinic. He had an odd spirometry test experience in that he was told to breathe in through the machine, normally and rapidly with just a thin white nylon filter separating the machine and the mouthpiece and was a bit concerned about the hygiene of this. Nurse didn't let him take in a full breath either so not clear on how this is supposed to measure lung capacity. I can't find any reference to patients being asked to breathe in through the machine? Is this normal? Also, the ear thermometer wasn't cleaned before hand or after and was just put back in the holster!
 
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The Irish Times The long and short of it - 'Long-Covid' is not unique in viral illnesses

quotes:
Immunologists don’t know for sure why SARS-CoV-2 causes extended ill health. But it resembles “post-viral fatigue syndrome,” which has been known for decades. “Brain fog and general malaise are classic symptoms. It is very real, and we’d love to know more about it,” says Prof Luke O’Neill, immunologist at Trinity College Dublin, about this syndrome.

...

Prof Akiko Iwasaki is an immunologist at Yale University. She views long-Covid as not unique and sees clear parallels with chronic fatigue syndrome. “It is very difficult to diagnose chronic fatigue syndrome and it is very difficult to treat it, because we don’t understand the underlying disease mechanism,” she explains. “It is one of those diseases that have been dismissed and patients have been mistreated in some cases.”
 
Tara Green said:
Does it matter which he is referred to does anyone know? Sounds a bit fishy as if he has long covid, would expect him to be transferred to long covid clinic? Thanks.
Click to expand...

I agree with Trish. I strongly suspect that Long Covid clinics will be therapist-run sausage machines to rehab, maybe with a cardiopulmonary assessment that I doubt would provide much useful information. A CFS clinic may be the same but may involve a proper medical assessment.

In either case probably the most useful thing is excluding some specific organ damage which is likely to show up as shortness of breath or swelling of the feet or other specific symptoms not particularly suggestive of ME/CFS.

If a GP suggests a CFS clinic rather than LongCovid clinic that is likely to be a sign that they are taking things seriously and have an impression that the LongCovid clinics are not all that?
 
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