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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
‘Long-haul’ covid-19 complications are real. I faced similar problems after surviving Ebola.
Washington Post article by Craig A. Spencer
September 19, 2020
https://www.washingtonpost.com/heal...c2fd20-f45c-11ea-bc45-e5d48ab44b9f_story.html

Excerpt:
Washington Post said:
As a doctor who treated hundreds of covid-19 patients in New York and sees them frequently in the emergency room, I know how this virus touched nearly every organ system, and how many still haven’t recovered months after their initial illness. But in a sense, I’m also a long-hauler myself.

In 2014, I fell ill with Ebola after taking care of patients in Guinea. I spent 19 days in the hospital, and thankfully ultimately survived. But for months I had joint and muscle pains. It hurt to walk. My hair fell out in chunks. All of that got better.

But some things didn’t.

To this date, nearly six years after my “recovery,” I continue to experience difficulty concentrating. My ability to create new memories is drastically reduced. I forget names and details of people I knew very, very well. And in the past six years, it hasn’t gotten any better.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Wow.

LONG COVID ADVOCATES JOIN TOGETHER TO FORM ALLIANCE TO MAKE POLICY RECOMMENDATIONS, SECURE RESEARCH FUNDING, AND TRANSFORM UNDERSTANDING OF POST-VIRAL ILLNESSES
https://solvecfs.org/wp-content/upl...ance-Launch-Press-Release-2-25-2021_FINAL.pdf

Excerpt:
Long Covid Alliance said:
LOS ANGELES, Calif. (February 25, 2021) – Today, leaders of 50 organizations and patient groups announced the formation of the Long COVID Alliance. The Alliance includes a network of patient-advocates, scientists, public health and disease experts, and drug developers who have joined together to leverage their collective knowledge and resources to educate policymakers and accelerate research that will address the challenges faced by ‘COVID long haulers’ and related post-viral illnesses.

Their goal is to transform the current understanding of Long COVID and related post-infectious illnesses such as: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos syndrome (EDS), hypermobility spectrum disorder (HSD) and mast cell activation syndrome (MCAS), autoimmune diseases and other related illnesses.

The alliance includes Solve ME, MEAction, the Covid-19 Longhauler Advocacy Project, and Body Politic, among many others. We've never seen such an alliance between ME/cfs groups and Long Covid groups before.

Here's the new website for the alliance:
https://longcovidalliance.org/


Related discussion:
Long Covid and ME Advocacy Groups Join Forces!
https://forums.phoenixrising.me/threads/long-covid-and-me-advocacy-groups-join-forces.82329/
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
Mansel Aylward, one of the prominent BioPsychoSocial (BPS) promoters who worked for insurance companies to deny benefits to ME patients, is now having a rethink after experiencing Long Covid for 9 months!

About Mansel Aylward:
https://me-pedia.org/wiki/Mansel_Aylward

Covid: 'This virus was completely underestimated'
https://www.bbc.com/news/uk-wales-56281824
Excerpt:
BBC Wales said:
Covid was "completely underestimated" and not enough was done to prepare for a pandemic in the UK, one of Wales' most senior doctors has said.

Prof Sir Mansel Aylward, ex-chairman of Public Health Wales, said he was "to blame as much as anyone".

Sir Mansel has spoken of struggling for months with physical and mental health issues after testing positive.
[...]
It would take Sir Mansel - also chairman of the Bevan Commission health think-tank as well as the Life Sciences Hub Wales - nine months to recover from the virus.

"The long-Covid as it's known, started two or three weeks after my acute attack and that disabled me even more," he said.

"I couldn't sleep, I couldn't even get out of a chair, I had to be helped, I had difficulties getting in and out of bed.

"I felt dreadful, I had days when I had depression. I wasn't thinking properly - that's a thing my family noticed. I found difficulty finding a word, I forgot things quickly. I said some silly things and did some silly things."
[...]
The under-estimation of the virus meant people "understandably said, including my colleagues, it's only a mild cold, sniffles, mild influenza. That was wrong and we should have been on to that much more quickly".
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
An interesting letter in the Lancet:

Long-haul COVID: heed the lessons from other infection-triggered illnesses (Aucott and Rebman, 2021)
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00446-3/fulltext

Excerpt:
Letter to Lancet said:
According to the Johns Hopkins Coronavirus Resource Center, more than 115 million people worldwide have been infected with SARS-CoV-2 during the COVID-19 pandemic, with extensive implications for morbidity and mortality.
[...]
Although the frequency, severity, and potentially the etiology of persistent symptoms can vary, sequelae after COVID-19 appears poised to join the range of other postinfectious syndromes described in the field of infectious diseases.2 These often share a common symptom phenotype, which might also meet case definitions for myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, or post-treatment Lyme disease. We hope that researchers and clinicians will draw on these other conditions as they continue to advance scientific understanding of so-called long-haul or persistent COVID-19.
[...]
Although peer-reviewed research is needed, patients with persistent symptoms after COVID-19 are already facing illness invalidation and disbelief from health-care providers, family, and friends.4 In listening to patients, the resolution of objective abnormalities is often not the whole story of their illness, and symptoms such as fatigue could instead be the most devastating to patients' quality of life. Postinfectious syndromes, including persistent symptoms after COVID-19, present a considerable challenge to clinicians and researchers. However, they also present the opportunity for novel, scientifically rigorous, inclusive, open-minded research with the aim of helping patients with these poorly understood conditions recover their health.
 

zzz

Senior Member
Messages
675
Location
Oregon
An excellent article from The Atlantic:

Unlocking the Mysteries of Long COVID

It's a great summary of what's been learned to date, and includes a number of illustrative case histories. It also makes a strong case tying long COVID to dysautonomia, and notes the similarities and differences between long COVID and POTS, ME/CFS, EDS, and other illnesses that feature dysautonomia. New treatment possibilities are also discussed.
 

BrightCandle

Senior Member
Messages
1,161
I am not really sure where to put this after coming across it today, I am kind of appalled but it shows the uphill battle even long covid patients with have with doctors, no surprise to ME/CFS sufferers that this is how doctors think but still even despite the evidence of the cause the dismissal as somatic is very real. Please don't go there and comment. The medicine subreddit had a post about "Is Long hauler the new CFS/ME/Fibro/Chronic Lyme". I am not going to link it directly but if you do find it don't comment. A few choice quotes are below incase the entire thread gets nuked since its been brigaded hard by the long covid and cfs subreddits and the mods have deleted all those comments.

Original Post:
I'm in Primary in the Midwest and in the last week alone I've seen 15 patients who proclaim to me that they are 'COVID long haulers' (self-diagnosed) and asking for referrals to every specialty on the planet.
There is a significant population overlap with the CFS/ME/etc. crowd, so my gut instinct is that the majority of this is somatic in nature (especially with lay-media coverage of COVID) and to proceed accordingly, but I am also hesitant to broach the discussion of psych with these patients as they have clearly been informed that this is a 'blow-off' from ignorant docs.
Have others seen the same, and what has your approach been?
Edit: judging by flairs this has already been brigaded. Thank you to the docs who responded with useful resources to guide patient care.


...
Just after listening to months of people all telling me their stories of how they got sick in Oct/Nov/Dec/Jan of 2019 with "the worst flu ever" and how their son's teammate's parent's coworker took a business trip to China in the fall so don't I think it was COVID? And this is in an area that has good adherence to public health guidelines and has had impressively few deaths. I'm not looking forward to all of the alleged post-covid complaints that will come pouring in soon.

The BMJ has a nice primer for managing this condition in primary care. I agree that for most patients this is a psychosomatic illness, and the evidence is that they respond well to holistic support, rest, symptomatic treatment, and gradual increase in activity.
It bothers me to see so many people on /r/medicine getting angry at the suggestion that psychosomatic diseases are real and need treatment.

Lemme guess. You have "chronic lyme" lol

Long haulers have a long uphill battle of getting recognized with these doctors and I don't think there is any evidence they would accept that this is a physical condition requiring care and treatment. Some of them show understanding but many don't.
 

Rufous McKinney

Senior Member
Messages
13,460
I am kind of appalled but it shows the uphill battle even long covid patients with have with doctors, no surprise to ME/CFS sufferers that this is how doctors think but still even despite the evidence of the cause the dismissal as somatic is very real.

In the US, haven't we committed substantial sums of money to conduct medical research on long haul COVID?

Meanwhile- who are these idiots commenting above? They look foolish.

One day I woke up and I no longer care about what Idiots think about my health. They know nothing. They are ignorant.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
I am not really sure where to put this after coming across it today, I am kind of appalled but it shows the uphill battle even long covid patients with have with doctors, no surprise to ME/CFS sufferers that this is how doctors think but still even despite the evidence of the cause the dismissal as somatic is very real. Please don't go there and comment. The medicine subreddit had a post about "Is Long hauler the new CFS/ME/Fibro/Chronic Lyme". I am not going to link it directly but if you do find it don't comment. A few choice quotes are below incase the entire thread gets nuked since its been brigaded hard by the long covid and cfs subreddits and the mods have deleted all those comments.

Gotta love Reddit. :bang-head:
 

BrightCandle

Senior Member
Messages
1,161
Its disheartening since as a community we have put a lot of faith in things changing for the better with long covid's recognition. My greatest fear is the vaccine stops the significant impact of Covid19 and everyone just moves on and all the new ME/CFS patients in 3-6 years will find there way to the disease with the same story about doctors we all have. I fear the research money will be embezzled or utilised on nonsense research. I was looking at the UK papers last week from the end of 2020 to end of February and I was appalled how primitive and ancient they all were, testing things that have long been tested with ME/CFS which was always my concern with having long covid under a different name and treated separately. Yet still the UK isn't funding any cutting edge research in regards to long covid that I can see, its all the same flawed nonsense of the past 30 years and in complete ignorance of the research the OMF has done.

I don't feel hopeful today about the prospects that long covid will help ME/CFS patients, these doctors are only going to grow in numbers as the same results come back for long haulers as they do for ME patients and if they don't use mRNA and blood flow and all these other research tests that show malfunctions they will literally find nothing and dismiss the lot.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
New discussions:

Long Covid improves after vaccine
https://forums.phoenixrising.me/threads/long-covid-improves-after-vaccine.83100/

Business Insider: Most coronavirus long-haulers are women. That may be because they mount a stronger immune response to the virus.
https://forums.phoenixrising.me/thr...-stronger-immune-response-to-the-virus.83193/

The Guardian: Long Covid more likely in working-age women than in men – study.
https://forums.phoenixrising.me/thr...e-women-than-in-men-study.83200/#post-2327617

The emerging spectrum of COVID-19 neurology: clinical, radiological and laboratory findings
https://forums.phoenixrising.me/thr...l-radiological-and-laboratory-findings.83204/

The Long Covid Picture - lingering effects of fatigue and brain fog helped from Vaccine.
https://forums.phoenixrising.me/thr...igue-and-brain-fog-helped-from-vaccine.83210/

Why many of those struck by Long Covid may be suffering from glandular fever (AKA Mono or EBV)
https://forums.phoenixrising.me/thr...-may-be-suffering-from-glandular-fever.83211/
 
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