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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 (FM), 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
@Pyrrhus, on your time off (just kidding on that one!), I was wondering if you'd been able to determine (just your thoughts) who has the most patients....the U.K. seems to have so many given its size, or the U.S.?

Hi Lenora!

If you're asking about ME patients, standard estimates are that there are roughly 250,000 ME patients in the UK and 1-2 million in the US. But yes, the patients in the UK seem more engaged in the ME/CFS community, for whatever reason.

If you're asking about Long Covid patients, no one knows exactly how many there are because they are difficult to count and there hasn't been a coordinated effort to count them thus far. Hopefully that will soon change!

Hope this helps!
 

lenora

Senior Member
Messages
4,692
Hi Lenora!

If you're asking about ME patients, standard estimates are that there are roughly 250,000 ME patients in the UK and 1-2 million in the US. But yes, the patients in the UK seem more engaged in the ME/CFS community, for whatever reason.

If you're asking about Long Covid patients, no one knows exactly how many there are because they are difficult to count and there hasn't been a coordinated effort to count them thus far. Hopefully that will soon change!

Hope this helps!

Thanks @Pyrrhus....helpful as ever. Yours, Lenora
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
"Long Covid" is what patients are calling it. But doctors and others are struggling to come up with a name for the "official" diagnosis.

One option is "Post-COVID Syndrome", which has been criticized because some say that it's not really "post-coronavirus symptoms ", it's "continuing coronavirus symptoms". Many Long Covid patients never had the acute "flu-like" symptoms, or had minor acute symptoms, but their initial symptoms simply continued on for months, sometimes in a fluctuating pattern.

So which term is going to win?

Some of you may be familiar with the International Classification of Diseases (ICD) that is used to record "official" diagnoses in health records. A similar classification is called SNOMED, which is heavily used in the UK.

A request has now been made to include the term "Post-COVID Syndrome" in SNOMED:
https://isd.hscic.gov.uk/rsp-snomed/user/guest/request/view.jsf?request_id=32731

(...)

UPDATE 25 September:
The day after the publication of the letter promoting "Long Covid", a new SNOMED request was made:
https://forums.phoenixrising.me/threads/long-covid-summary-of-discussions.81357/#post-2298528

And the WHO added the following update to ICD-10

(...)


SNOMED CT is a comprehensive clinical terminology system used in many countries in parallel with ICD-10. It is used at the point of contact with the patient to record reason for encounter, diagnosis etc.

ICD-10 is used after the encounter for collecting data for local, national and WHO statistical analysis.

For NHS England, SNOMED CT UK Edition has been the mandatory terminology system for use in primary care since April 2018 and replaced the now retired Read Code (CTV3) primary care terminology system.

SNOMED CT is in the process of being rolled out across all NHS England secondary care settings, including mental health and dentistry.

SNOMED CT codes are mapped to ICD-10 codes and SNOMED International's terminology leads may wish to work with the WHO on development of terminology.


Three requests for addition of terminology to SNOMED CT UK Edition (potentially also for consideration for addition to the International Edition) have been submitted:

The following Concept terms have now been requested:

1 'Post COVID-19 syndrome' (requester adds "please double check with clinical bodies")
2 'Post-COVID syndrome'
3 'Long Covid' and 'Suspected long Covid'

The second of these requests was submitted by a GP, Dr Simon Lennane - not by one of the "Long Covid" advocacy groups or one of the clinical/academic collaborations.


NHS Digital has responded to two requests for advice on coding for "Long COVID" and COVID-19 sequelae in ICD-10:

https://dxrevisionwatch.files.wordpress.com/2020/10/query-22-july-2020.png

and an earlier response to a request for advice here:

https://dxrevisionwatch.files.wordpress.com/2020/10/query-1-18-may-2020-2.png



According to Trish Greenhalgh, there is a committee (Professional Standards Board) working on terminology and definitions, under chair, Prof Maureen Baker CBE:



Twitter thread here, discussing development of terminology:



There is a thread on Science for ME Forum monitoring the development of terminology and definitions for post COVID-19 sequelae and "Long COVID":

https://www.s4me.info/threads/post-covid-19-syndrome-snomed-coding.16833/


The U.S.'s CDC has published this guidance for ICD-10-CM users:
https://www.cdc.gov/nchs/data/icd/I...ce-Interim-Advice-coronavirus-feb-20-2020.pdf


This is the Revised Autumn 2020 release schedule for UK SNOMED CT:

https://hscic.kahootz.com/connect.ti/t_c_home/view?objectID=22238064

07 October 2020 (already released )

Additional UK releases are scheduled for:

04 November 2020 (20201028)
02 December 2020 (20201125)

So potentially, a term or terms and Concept code (or codes) might be added to SNOMED CT in the November or December release, if consensus is reached before the deadlines for addition of new codes.

The UK Edition of SNOMED CT is specifically for UK use. If standardised terminology and code(s) are being considered for the International Edition, these would be absorbed by the various national extensions (though national extensions may also include additional terms under Synonyms for country specific use).
 
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PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
BBC: "Long Covid: Who is more likely to get it?"

Excerpts from the article:
* The study, seen by the BBC, estimates one in 20 people are sick for least eight weeks.
* The research at King's College London also showed being female, excess weight and asthma raised the risk.
* The results, which are due to be published online, show long Covid can affect anyone, but some things do raise the risk.
* "Having more than five different symptoms in the first week was one of the key risk factors," Dr Claire Steves, from Kings College London, told BBC News.
* The risk also rises with age - particularly over 50 - as did being female.
* No previous medical conditions were linked to long Covid except asthma and lung disease.
 

roller

wiggle jiggle
Messages
773
Dr. Fauci interview on 60 Minutes overtime- he discusses the long haul COVID issue towards the end of this interview.

https://www.cbsnews.com/news/fauci-no-surprised-trump-covid-19-media-appearances-60-minutes/

He mentioned brain fog as a persistent long haul symptom...that topic having to do with difficulties "concentrating".

there is also tiredness, exhaustion... basically (imo), a lot of basic symptoms common to mecfs which are now mentioned with covid19.
found it also interesting that this state of "brain shut down" is called with covid "encephalitis".

i never thought seriously of a viral-mecfs cause, but with this covid im indeed wondering whats going on...

wouldnt be surprised when pretty much the whole concept of "infection" is rubbish...
 
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Hip

Senior Member
Messages
17,704
Interesting BBC article here: Long Covid could be four different syndromes.

The four different syndromes are:
  • permanent organ damage to the lungs and heart
  • post-intensive-care syndrome
  • post-viral fatigue syndrome
  • continuing COVID-19 symptoms
I think it would only be the post-viral fatigue syndrome that corresponds to ME/CFS. Lung or heart damage might create fatiguing symptoms, but these would appear to be different from ME/CFS. It is of course possible that some long COVID patients might have both post-viral fatigue and lung or heart damage.



I found this long COVID symptom cluster diagram interesting also.
 

lenora

Senior Member
Messages
4,692
Pyrrhus.....thanks, I read the entire thread, you'll see that I made another response to you. Yours, Lenora.
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
...And the news stories just keep on coming!!!


Guardian UK: Long Covid: overlap emerges with ME – including debate over treatment
https://www.theguardian.com/world/2...erges-with-me-including-debate-over-treatment
Excerpt:
Guardian said:
As more people suffer lasting symptoms from Covid including fatigue, ME patient advocates fear they will get bad advice

Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, Small agreed. “It put me in bed for several days afterwards,” she said.

In June, she returned to work as a GP, for a single half day: “It floored me completely for 10 days and took two months to get back to where I was prior to that,” she said. “I couldn’t speak one day due to the fatigue and struggled to stay hydrated as I didn’t have the energy to eat or drink.”

Before Covid, Small ran 5km at least three times a week. Now, even opening her eyes is a strain some days.


CBS 60 Minutes: Puzzling, often debilitating after-effects plaguing COVID-19 "long-haulers" (television)
A very well-received television program raising awareness about Long Covid. No mention of ME.
https://www.cbsnews.com/news/covid-long-haulers-60-minutes-2020-11-22/
Excerpt:
CBS 60 Minutes said:
Doctors are still searching for answers to why a portion of people who were diagnosed with COVID-19 are still suffering symptoms months later. Anderson Cooper reports.

COVID-19 was initially thought to be a disease that was serious for the eldery and people with preexisting conditions. A potentially tough, but temporary respiratory illness for everyone else. But now, eight months into the pandemic, younger patients who have had relatively mild cases of COVID, are showing up in doctors offices and emergency rooms with mysterious and debilitating symptoms. It's not unusual for viruses to cause aftereffects, but as you'll hear tonight, doctors tell us they've never seen anything like this. While researchers around the world are scrambling to figure out what's happening, Mount Sinai Hospital here in New York opened one of the first centers to study and treat people with what they're calling "Post-acute COVID Syndrome." The patients we met have a less clinical term - they call themselves "long-haulers."


FiveThirtyEight: What We Know About ‘Long COVID’ (podcast)
https://fivethirtyeight.com/features/theres-no-longterm-plan-for-long-covid/
Excerpt:
FiveThirtyEight said:
On this week’s episode of PODCAST-19, we do a deep dive into “long COVID,” which is when people who’ve survived COVID-19 continue to experience a variety of symptoms for weeks, or sometimes months, after their acute illness. What’s causing this disease to linger for so many people? And what will happen to our health care system if a lot of people are sick for years to come with a hard-to-define illness?


Medscape: Warning for COVID Long Haulers From Polio Survivors (requires login)
https://www.medscape.com/viewarticle/939596
Excerpt:
Medscape News said:
When working as a family doctor in Denver, Marny Eulberg, MD, noticed that she had begun to feel weaker and more tired than usual and was having trouble lifting the front part of her foot off the ground when she walked. One day, doing rounds at a local hospital, she fell and landed hard on her outstretched wrists.
"I probably ought to pay attention to this," Eulberg recalls thinking. The year was 1985...
(See also:
Parallels between Post-Polio Fatigue and Chronic Fatigue Syndrome: A Common Pathophysiology?
https://www.papolionetwork.org/uplo...en_post-polio_fatigue_and_chronic_fatigue.pdf )


Psychology Today: Halloween Nightmare: The Long-Hauler Tragedy
Although their articles are generally terrible, this one is by the great Dr. Leonard Jason.
https://www.psychologytoday.com/us/...0/halloween-nightmare-the-long-hauler-tragedy
Excerpt:
Psychology Today said:
Imagine waking up one morning and feeling sicker than you have ever felt. You have had a bad case of the flu before, so you reason you will get over this infection and soon recover. As the days pass, new unusual and concerning symptoms appear, like the inability to taste or smell, but you continue to believe that you will overcome these symptoms.

Days and weeks pass, the symptoms still persist, and the fatigue is so overwhelming that you continue to cut back on work and family responsibilities. You have entered a new world, one that is increasingly socially isolating, and now you have debilitating symptoms that feel overwhelming.

This is the COVID-19 nightmare for many people, called “long-haulers,” who have not recovered after several weeks of being infected with COVID-19.


STAT: I have all the symptoms of a Covid-19 long-hauler — but I’m hesitant to identify myself as one
https://www.statnews.com/2020/10/26/hesitant-identify-myself-as-covid-long-hauler/
Excerpt:
STAT said:
As a physician, I never thought that I would someday be lumped into the category of patients known as “not otherwise specified,” or NOS for short. This category is dominated by women suffering nonspecific symptoms that are inconsistently appreciated by clinicians who eventually conclude that the problem is entirely in the mind.

My induction into this group began on March 23. The emergency department in which I work had been seeing coronavirus patients, at first without our donning standardized personal protective equipment or following universal masking protocols. So when I developed a deep, dry cough, it was not outside the realm of possibility that I had contracted Covid-19. I notified my hospital’s occupational health department, even though I was personally convinced that my lungs were fighting a different, less serious respiratory virus, and that I would be back at work within days.


MIT Technology Review: Covid-19 “long haulers” are organizing online to study themselves
https://www.technologyreview.com/20...rs-are-organizing-online-to-study-themselves/
Excerpt:
MIT Technology Review said:
Slack groups and social media are connecting people who've never fully recovered from coronavirus to collect data on their condition.

Gina Assaf was running in Washington, DC, on March 19 when she suddenly couldn’t take another step. “I was so out of breath I had to stop,” she says. Five days earlier, she’d hung out with a friend; within days, that friend and their partner had started showing three classic signs of covid-19: fever, cough, and shortness of breath.

Assaf had those symptoms too, and then some. By the second week, which she describes as “the scariest and hardest on my body,” her chest was burning and she was dizzy. Her friend recovered, but Assaf was still “utterly exhausted.” A full month after falling ill, she attempted to go to grocery shopping and ended up in bed for days.


Buzzfeed News: COVID Is Making Younger, Healthy People Debilitatingly Sick For Months. Now They’re Fighting For Recognition
https://www.buzzfeednews.com/article/briannasacks/covid-long-haulers-who-coronavirus
Excerpt:
Buzzfeed News said:
Across the globe, scores of COVID “long-haulers” have been fighting for doctors to believe and help them. On Friday, they finally got a meeting with the World Health Organization.

There were weeks when Hannah Davis couldn’t remember how to send a text message. On top of the extreme fatigue, racing heart rate, and difficulty breathing she experienced daily, the most terrifying part of being sick with COVID-19 for the last 21 weeks, Davis said, has also been one of the hardest to explain: losing her mind.

“I feel like I have a brain injury. I have a hard time remembering who I was,” she said. “It was hard to remember I had to feed myself a couple times a day.”


Harvard Health Blog: The tragedy of the post-COVID “long haulers”
A blog from ME/cfs researcher Dr. Anthony Komaroff
https://www.health.harvard.edu/blog/the-tragedy-of-the-post-covid-long-haulers-2020101521173
Excerpt:
Komaroff said:
Suppose you suddenly are stricken with COVID-19. You become very ill for several weeks. On awakening every morning, you wonder if this day might be your last.

And then you begin to turn the corner. Every day your worst symptoms — the fever, the terrible cough, the breathlessness — get a little better. You are winning, beating a life-threatening disease, and you no longer wonder if each day might be your last. In another week or two, you’ll be your old self.

But weeks pass, and while the worst symptoms are gone, you’re not your old self — not even close. You can’t meet your responsibilities at home or at work: no energy. Even routine physical exertion, like vacuuming, leaves you feeling exhausted. You ache all over. You’re having trouble concentrating on anything, even watching TV; you’re unusually forgetful; you stumble over simple calculations. Your brain feels like it’s in a fog.


Medscape: Nearly 1 in 5 Develop Mental Illness Following COVID-19 (requires login)
A controversial article that does not distinguish between neurological symptoms and "Mental
illness"!
https://www.medscape.com/viewarticle/940922
Excerpt:
Medscape News said:
One in five COVID-19 patients are diagnosed with a psychiatric disorder such as anxiety or depression within 3 months of testing positive for the virus, new research suggests.
 
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lenora

Senior Member
Messages
4,692
Thanks, @Pyrrhus for the '60 Minute Interview' most especially. What can one say? It sounds like the same old drill that we've been through since the time of the Aids Crisis. Except there's one huge difference, no one listened, or at least very few whispered about it.

The "long-haulers" may be our ticket out of this, I have no idea nor does anyone else when all is said and done. If you asked me if I found the interviews depressing, I would have to answer, "Yes." So many years have passed and yet so little proven research has come out on this illness. It seems to have so much to do with mustard gas poisoning (WWI), horrific reactions to things that normal people can take, POW's from WWII, alcohol and drug abuse, POW's from the Vietnamese war and now the victims of the Gulf War, and so many, many others. I think the nervous system is overwhelmed and that's only the beginning of what's causing what.

Each of the interviews sounded exactly like the same we've found over and over again since this all began with say, The London Free Hospital post-polio virus outbreak. . I personally knew one of the polio survivors who was pregnant at the time. (Here, that is...not London.) True, she lived to the ripe old age of 95, but was in constant pain and had so many of the symptoms I had. Even her family didn't know how horribly she suffered.

Good for this new group, at the very least they'll remove the stigma we've faced for so many years. Perhaps then an answer will be found for what is going on and why. I was 42 when all of this began. I didn't consider myself singled out, but there was no information anywhere on the illness. Other groups before me suffered even more....I don't know how they tolerated the prejudice that was clearly directed against them. And that, next to MS, which I well remember as being "all in your head", and cancer victims (who couldn't even give items to loved ones b/c they thought germs were attached to them,) are the only two groups that I've seen make progress in that time. Us? We just linger and linger and as much as I'm glad the interview by Anderson Cooper was done, it brought back old feelings that I thought I had dealt with long ago.

To be made to feel like a pariah in society is a terrible thing. I'm not denying there is some psychiatric component involved, but more than that is that a physical explanation is long, long overdue. I applaud these "long haulers" for bringing this to light, both to the public and to the general public. We tried, but ournumbers were too small....be glad that they aren't keeping silent. It's our best defense. Yours, L.
 

Stretched

Senior Member
Messages
700
Location
U.S. Atlanta
Wow, what an exhaustive presentation by @Pyrrhus, et al. The information could be collated and put into pamphlet form for leaders to reference, not that I’m volunteering anyone;). It would sure demonstrate the dedication and euridition of the Phoenixrising.me group. BTW, for ease of reference, here’s a short re-post I put elsewhere before hitting this major thread.

This is a webinar December 9, 2020, I noticed in a recent email from some of the gurus from solveMECFS and the COVIDs group, likely or certainly appropriate pursuant to the information referenced in this thread:

1606604531279.png
 

Pyrrhus

Senior Member
Messages
4,172
Location
U.S., Earth
This is a webinar December 9, 2020, I noticed in a recent email from some of the gurus from solveMECFS and the COVIDs group, likely or certainly appropriate pursuant to the information referenced in this thread:

That's a great find! If the webinar is recorded, and someone comes across the link, please feel free to share it here or in a new thread, as applicable...
 

lenora

Senior Member
Messages
4,692
Wow, what an exhaustive presentation by @Pyrrhus, et al. The information could be collated and put into pamphlet form for leaders to reference, not that I’m volunteering anyone;). It would sure demonstrate the dedication and euridition of the Phoenixrising.me group. BTW, for ease of reference, here’s a short re-post I put elsewhere before hitting this major thread.

This is a webinar December 9, 2020, I noticed in a recent email from some of the gurus from solveMECFS and the COVIDs group, likely or certainly appropriate pursuant to the information referenced in this thread:

View attachment 40624


I'll put that on my calendar....but @Stretched, would you kindly remind us again? Thanks. Yours, Lenora.
 

Stretched

Senior Member
Messages
700
Location
U.S. Atlanta
As noted in the email, which you’re likely to receive: from solvecfs.org:
We create as many as 10 webinars every year, each with timely research updates or targeted educational content valuable to patients, researchers, and health care providers.

You can watch all of our webinars here.

When:
Wednesday, December 9 at 10 am PT/1 pm ET,
Register here.