Post by Nadica (She/Her) on Nov 12, 2024 0:38:09 GMT
LONG COVID ON RAMP (google doc)
Follow the link for all the hyperlinks
BEFORE ANYTHING: If you are experiencing fatigue or cognitive difficulties please read this article on pacing first and take your time going through the info below. Pacing is an extremely important part of living with LC and slowing its progression. Pacing includes portioning out emotional processing and mental strain as well as physical activity.
WHO WROTE THIS?: Hi! I’m Alyssa Harad. I’m not a medical professional or a researcher and I don’t have Long Covid. I am in no way an expert or an authority. I do have friends with LC and Chronic Fatigue Syndrome. I’m invested in their well-being and in my own and I owe the disability community a great deal for helping me navigate the ongoing Covid pandemic. I put these resources together for the friend of a friend from resources suggested by the LC community on Bluesky. (Statements in quotation marks are direct from those folks.) I figured I might as well make them available to everyone. This is not the only Long Covid Primer out there. You can find another good one here and this one has a series of good links. I have also incorporated info from this Bluesky thread. I kept this document short so folks wouldn’t get overwhelmed–it is not comprehensive. If you have questions about what’s here or feel strongly that something should be added or removed please feel free to chat with me on Blue Sky.
GETTING A DIAGNOSIS AND HELP: THE MEDICAL STUFF
As you probably already know, Long Covid is a term that encompasses many other illnesses and symptoms, most of which do not show up on a regular panel of bloodwork. Getting help from an ordinary GP often involves finding someone open enough to listen to and be educated by their patient. However, once you do—and even if you don’t—there are protocols for diagnosing and managing (though rarely curing) many common aspects of LC. The following are some of the things you might be experiencing. This is not an exhaustive list, nor are the resources offered the only ones available. If you would like a short cut here is an infographic directed at GPs created by The BMJ that you can show to your doctor. It lists many of the major aspects of Long Covid and shows how they are interrelated.
PEM (Post Exertional Malaise) and related Post Exertion Symptoms Exacerbation and Post Exertion Neuroimmune Exhaustion: a simple explainer. Note it is geared toward milder versions. Yours might be more severe. youtu.be/UkS6L3Klc00
Orthostatic Intolerance: a related syndrome to PEM. OI is treatable! youtu.be/Gh4vpKsLbr8
POTS (Postural Orthostatic Tachycardia Syndrome): a common aspect of OI. POTS is also treatable! If the description at the link sounds familiar you can give these instructions for a simple lean test to your GP.
MCAS (Mast Cell Activation Syndrome)/Mast Cell Disorders: If you are experiencing new food intolerances, allergies and inflammation, especially of the skin this might be especially helpful but MCAS manifests in other ways too. The explainer includes links at the end that you can pass on to your doctor. www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/
ME/CFS (Myalgic Encephalitis/Chronic Fatigue Syndrome—two names for the same syndrome): The experience of Long Covid, especially for people with PEM/POT/MCAS, overlaps with people who have ME/CFS to such an extent that patient led research and activism in the two groups is often combined. ME/CFS has been around a lot longer than Long Covid, and chronically ill people with ME have much advice and hard won knowledge to share with LC folks. I personally have my fingers and toes crossed that LC research will also help ME/CFS patients. In any case, if you spend any time researching LC, or trying to figure out how to mitigate LC, you will find yourself amongst people with ME so it’s worth familiarizing yourself with what it is. You can also share this excellent paper on the diagnosis and management of ME/CFS, co-authored by patient researcher and activist Jaime Seltzer, and tell them about this continuing medical education course on ME/CFM also co-authored by Jaime Seltzer.
Diabetes: Covid has been linked to raised blood sugar. You may want to have your doc check your blood sugar levels. This too can be managed.
Increased risk of heart attack and stroke: Let your doctor know you are at risk. You may want to have your doctor screen you for increased risk of blood clotting. More recent research shows many people with LC have microclotting. Microclots will not show up on a regular blood clotting test. When I was gathering this information, I heard from a now-retired doc whose practice identified microclots via MRI. It’s worth asking your doc about this and keeping up with research from Putrino Labs (see previous linked article and people to follow on social media below) which is working on a scalable test for microclots.
More info on common manifestations of Covid, rehab programs and medications: This wonderful primer on Long Covid whose author can be found on Bluesky lists some additional ways LC affects the body and includes a very useful section on current rehab programs and medications and some places to avoid. She is located in the UK so some of the info is not relevant for the US but the bulk of it is extremely useful.
Long Covid Studies: A website compiling Long Covid studies looking for participants. longcovidstudies.net/
SOCIAL MEDIA RESOURCES: FINDING COMMUNITY
The LC community on social media is very strong and often more knowledgeable than the average doctor about the most recent research and the efficacy of different experimental treatments.
Blue Sky I gathered most of the recs in this document from the LC folks I talked to on Bluesky. If you decide to join us there, say hello and we’ll connect you. It’s a small but lively community (as is the site itself). Here’s a link to LC activist and researcher Jaime Seltzer’s intro post explaining how feeds work. She’s a great follow, too! You can also subscribe to this Bluesky LongCovid feed or use this Long Covid Starter Pack or this one gathering LC and ME folks. other starter pack based around disability and illness to find people. Note: post-2024 election, many people are deleting their X accounts and moving over to Blue Sky so you may want to use the list of X recs below to search for people on Blue Sky.
Reddit: “I’d strongly encourage her to read r/cfs in addition to r/covidlonghaulers, until/unless she has categorically ruled out ME and PEM (even then it’s good awareness as those issues can develop later).”
Facebook: “Facebook also has some good groups (as well as many bad ones). Since she’s in CA, the #MEAction California group would also be a place to start, to ensure she’s in good hands (not every state has one but CA’s is very well-established.)”
Discord: The Patient-Led Research Collaborative runs a private discord. You can contact them for an invite. (They gave me one for this doc but it expired)
Twitter (X): Twitter is a mess of trolls and disinformation thanks to Elon Musk, but there’s still a strong community of researchers there who make themselves available to patients for questions and conversations. See the section on “The experts” here for a list of experts to follow. The community will appear to you very quickly in the replies. Many of the same people have blogs or Substacks you can subscribe to.
Long Covid Alliance: Offers support groups and mental health support. longcovidalliance.org/support-groups-and-mental-health-resources
RESEARCH SOURCES:
Recover: A website devoted to collecting LC research and activist initiatives.
recovercovid.org/
Wikipedia: “The Long Covid and ME/CFS pages on real Wikipedia are now being managed by someone who has a doctorate in the sciences as well as Long Covid herself, so they are actually quite reliable despite being a wiki.”
Health Rising: Blog good for research summaries on Long Covid and ME/CFS related work. www.healthrising.org/
The Sick Times: A newsletter organized by LC folks covering relevant medical and political news including personal essays from LC folks. A great way to find folks to follow and read elsewhere. For example, the current leading article is by a doc who was disappointed in the care offered by her colleagues, so she developed this website. thesicktimes.org/
Long Covid Physio: A series of explainer videos. longcovid.physio/long-covid-video-series
TLC Sessions: The Long Covid Sessions Podcast www.tlcsessions.net/
Follow the link for all the hyperlinks
BEFORE ANYTHING: If you are experiencing fatigue or cognitive difficulties please read this article on pacing first and take your time going through the info below. Pacing is an extremely important part of living with LC and slowing its progression. Pacing includes portioning out emotional processing and mental strain as well as physical activity.
WHO WROTE THIS?: Hi! I’m Alyssa Harad. I’m not a medical professional or a researcher and I don’t have Long Covid. I am in no way an expert or an authority. I do have friends with LC and Chronic Fatigue Syndrome. I’m invested in their well-being and in my own and I owe the disability community a great deal for helping me navigate the ongoing Covid pandemic. I put these resources together for the friend of a friend from resources suggested by the LC community on Bluesky. (Statements in quotation marks are direct from those folks.) I figured I might as well make them available to everyone. This is not the only Long Covid Primer out there. You can find another good one here and this one has a series of good links. I have also incorporated info from this Bluesky thread. I kept this document short so folks wouldn’t get overwhelmed–it is not comprehensive. If you have questions about what’s here or feel strongly that something should be added or removed please feel free to chat with me on Blue Sky.
GETTING A DIAGNOSIS AND HELP: THE MEDICAL STUFF
As you probably already know, Long Covid is a term that encompasses many other illnesses and symptoms, most of which do not show up on a regular panel of bloodwork. Getting help from an ordinary GP often involves finding someone open enough to listen to and be educated by their patient. However, once you do—and even if you don’t—there are protocols for diagnosing and managing (though rarely curing) many common aspects of LC. The following are some of the things you might be experiencing. This is not an exhaustive list, nor are the resources offered the only ones available. If you would like a short cut here is an infographic directed at GPs created by The BMJ that you can show to your doctor. It lists many of the major aspects of Long Covid and shows how they are interrelated.
PEM (Post Exertional Malaise) and related Post Exertion Symptoms Exacerbation and Post Exertion Neuroimmune Exhaustion: a simple explainer. Note it is geared toward milder versions. Yours might be more severe. youtu.be/UkS6L3Klc00
Orthostatic Intolerance: a related syndrome to PEM. OI is treatable! youtu.be/Gh4vpKsLbr8
POTS (Postural Orthostatic Tachycardia Syndrome): a common aspect of OI. POTS is also treatable! If the description at the link sounds familiar you can give these instructions for a simple lean test to your GP.
MCAS (Mast Cell Activation Syndrome)/Mast Cell Disorders: If you are experiencing new food intolerances, allergies and inflammation, especially of the skin this might be especially helpful but MCAS manifests in other ways too. The explainer includes links at the end that you can pass on to your doctor. www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/
ME/CFS (Myalgic Encephalitis/Chronic Fatigue Syndrome—two names for the same syndrome): The experience of Long Covid, especially for people with PEM/POT/MCAS, overlaps with people who have ME/CFS to such an extent that patient led research and activism in the two groups is often combined. ME/CFS has been around a lot longer than Long Covid, and chronically ill people with ME have much advice and hard won knowledge to share with LC folks. I personally have my fingers and toes crossed that LC research will also help ME/CFS patients. In any case, if you spend any time researching LC, or trying to figure out how to mitigate LC, you will find yourself amongst people with ME so it’s worth familiarizing yourself with what it is. You can also share this excellent paper on the diagnosis and management of ME/CFS, co-authored by patient researcher and activist Jaime Seltzer, and tell them about this continuing medical education course on ME/CFM also co-authored by Jaime Seltzer.
Diabetes: Covid has been linked to raised blood sugar. You may want to have your doc check your blood sugar levels. This too can be managed.
Increased risk of heart attack and stroke: Let your doctor know you are at risk. You may want to have your doctor screen you for increased risk of blood clotting. More recent research shows many people with LC have microclotting. Microclots will not show up on a regular blood clotting test. When I was gathering this information, I heard from a now-retired doc whose practice identified microclots via MRI. It’s worth asking your doc about this and keeping up with research from Putrino Labs (see previous linked article and people to follow on social media below) which is working on a scalable test for microclots.
More info on common manifestations of Covid, rehab programs and medications: This wonderful primer on Long Covid whose author can be found on Bluesky lists some additional ways LC affects the body and includes a very useful section on current rehab programs and medications and some places to avoid. She is located in the UK so some of the info is not relevant for the US but the bulk of it is extremely useful.
Long Covid Studies: A website compiling Long Covid studies looking for participants. longcovidstudies.net/
SOCIAL MEDIA RESOURCES: FINDING COMMUNITY
The LC community on social media is very strong and often more knowledgeable than the average doctor about the most recent research and the efficacy of different experimental treatments.
Blue Sky I gathered most of the recs in this document from the LC folks I talked to on Bluesky. If you decide to join us there, say hello and we’ll connect you. It’s a small but lively community (as is the site itself). Here’s a link to LC activist and researcher Jaime Seltzer’s intro post explaining how feeds work. She’s a great follow, too! You can also subscribe to this Bluesky LongCovid feed or use this Long Covid Starter Pack or this one gathering LC and ME folks. other starter pack based around disability and illness to find people. Note: post-2024 election, many people are deleting their X accounts and moving over to Blue Sky so you may want to use the list of X recs below to search for people on Blue Sky.
Reddit: “I’d strongly encourage her to read r/cfs in addition to r/covidlonghaulers, until/unless she has categorically ruled out ME and PEM (even then it’s good awareness as those issues can develop later).”
Facebook: “Facebook also has some good groups (as well as many bad ones). Since she’s in CA, the #MEAction California group would also be a place to start, to ensure she’s in good hands (not every state has one but CA’s is very well-established.)”
Discord: The Patient-Led Research Collaborative runs a private discord. You can contact them for an invite. (They gave me one for this doc but it expired)
Twitter (X): Twitter is a mess of trolls and disinformation thanks to Elon Musk, but there’s still a strong community of researchers there who make themselves available to patients for questions and conversations. See the section on “The experts” here for a list of experts to follow. The community will appear to you very quickly in the replies. Many of the same people have blogs or Substacks you can subscribe to.
Long Covid Alliance: Offers support groups and mental health support. longcovidalliance.org/support-groups-and-mental-health-resources
RESEARCH SOURCES:
Recover: A website devoted to collecting LC research and activist initiatives.
recovercovid.org/
Wikipedia: “The Long Covid and ME/CFS pages on real Wikipedia are now being managed by someone who has a doctorate in the sciences as well as Long Covid herself, so they are actually quite reliable despite being a wiki.”
Health Rising: Blog good for research summaries on Long Covid and ME/CFS related work. www.healthrising.org/
The Sick Times: A newsletter organized by LC folks covering relevant medical and political news including personal essays from LC folks. A great way to find folks to follow and read elsewhere. For example, the current leading article is by a doc who was disappointed in the care offered by her colleagues, so she developed this website. thesicktimes.org/
Long Covid Physio: A series of explainer videos. longcovid.physio/long-covid-video-series
TLC Sessions: The Long Covid Sessions Podcast www.tlcsessions.net/