A Comprehensive Guide for COVID-19 Longhaulers and Physicians: The PASC Master Document

This “Master Document” was created as a guide to help Longhaulers and their physicians work as
a team in an attempt to get the patient back to good health and regain quality of life. A year into the
Pandemic, we are still struggling to curb it and still lack understanding in Post-Covid Syndrome now being
referred to as Post-Acute Sequela of Covid-19. There are now millions of Longhaulers in the United
States alone and millions more around the world. This document has been thoroughly built over months
and is updated multiple times a month. It is imperative to save the link to this document as updates are
saved automatically to google, but if you print it or save it to your desktop, you will only have access to the
version you downloaded. Everything in this document is based off findings in Longhaulers only. Included
information has been vetted and is known to commonly and frequently be found and occur in
Longhaulers. Longhaulers are facing extreme medical gaslighting and are having every aspect of life
impacted by their illness. There are a lot of statements, tips and guidance related to these things within.
Longhaulers, please use the information within to advocate for yourself, educate yourself and those you
are surrounded by. Physicians and researchers, please use the information within to become familiar with
PASC, longhauler experiences and needs. We are easily approachable and encourage collaboration, so
please do not hesitate to contact us.
The Covid-19 Longhauler Advocacy Project is a group for Longhaulers, those with chronic
symptoms and illness for over a month. Most Longhaulers in this group are over 10 months post infection
(as of 2/2021). Many have developed new, chronic and potentially lifelong health conditions triggered by
Covid-19. Approximately 90% were never hospitalized and had mild to moderate infection and now report
their health issues being worse than acute infection and as debilitating, altering life as they knew it.
Our mission is advocacy, education and support. We advocate for legislation to protect and help
Longhaulers and for medical care and recognition. We provide education to our members, to health care
providers and researchers and will fight to prevent and stop the gaslighting and lack of knowledge on
PASC prohibiting physicians from providing their patients quality care. We provide support for members
who often have no one else to turn to besides other Longhaulers going through the same experience.
This is a safe place, this is a place for change and for hope, but we need all of you to support our efforts
and show up when asked to.
The Covid-19 Longhauler Advocacy Project is a Co-Founder of the Long Covid Alliance with
Solve ME and the Global Pandemic Coalition. You can visit longcovidalliance.org for more information on
who we are, what we have done, and what we are working on, including NIH recommendations and
funding agendas. We are here to help, create a path forward to healing, to advocate for all of you,
educate the world and provide the support you need. Please feel free to message our admin or
moderators with any questions, especially media requests. We look forward to continuing to be the
leading Long Covid Advocates and paving the way for Longhaulers.
Karyn Bishof
Founder, Covid-19 Longhauler Advocacy Project
Co-Founder, Long COVID Alliance
B.S Exercise Science & Health Promotion, Firefighter/ Paramedic, Phys. Ed & Health Teacher.
 2

Index

P.3 What Should Physicians Be Doing

P.4 Gold Standard Testing For Every Patient

P.5 Diagnostic Testing By Specialty

P.6 Diagnostic Labs

P.9 The Longhauler Index: Dr. Bruce Patterson

COVID-19 ICD-10 Codes

P.10 What We Are Seeing In Longhaulers

P.17 Preparing For and Advocating At Doctors Appointments

P.19 Advocating In The Workplace

P.20 Advocating With Friends And Family

P.21 Reinfections And Reporting Loopholes

P.22 Contributing To Research And Advocacy

P.23 Current Projects

P.24 Contact Us
 3

What Should Physicians be Doing

Listen to and validate This is probably the most important thing you can do. Longhaulers have been ignored, dismissed and let down for
your patient. months. Physicians are not listening to them, do not believe them, tell them it’s all in their head, diagnose them with
anxiety, tell them this is normal and give it time, or that they have never heard of anyone else having these issues, or
this severity of issues. DO NOT BE THAT DOCTOR.

Plan ahead for more time with this patient to discuss a complex history post-COVID.
Understand Longhaulers are not just living through a pandemic, but make up the pandemic.
Longhaulers are seeking your help and guidance. Give them the time and attention deserved.

Offer your patient There is pre-covid medicine and post-covid medicine. Anything goes with this virus. Everything listed in this document
testing. is being found and diagnosed in Longhaulers in very large numbers and included for a reason. Just because you
haven’t heard of or seen it yet, doesn’t mean it is not a possibility. Just because there is no publication out on it yet
does not mean it’s not valid. We are 5-6 months ahead of all publications and information coming out. Listen. You have
the potential to curb a life-long issue if corrected now. Take action. There are plenty of ICD-10 codes now out to cover
testing for suspected covid related issues!

Take the time to All patients are encouraged to heavily document their covid experience and be able to produce this information and
review your patients evidence at appointments. Many Longhaulers are suffering extreme medical ptsd from gaslighting. They are
documents. encouraged to pre-load their physicians before the appointment. Your staff MUST ask patients if they are Longhaulers
and alert you to that with enough time that you can review this patients issues they are preloading you with prior to the
appointment. Does it take extra time from you? YES. Is it your obligation to provide quality care? YES. Longhaulers
are waiting 3+ months for appointments and eager for answers, validation and solutions when they finally arrive.

Preloading not only helps with the patient's brain fog and memory issues in addition to the medical ptsd, but it also
gives you the opportunity to research and consult other physicians prior to the appointment so that the appointment
goes smoothly and can be focused on solutions rather than a review of the past year of the patient's life. We are
coming for solutions. Help.

Research and To reiterate the above, patients are coming to you for solutions. If you are not fully up to date on Longhaulers,
educate yourself. Post-Covid Syndrome, and the other illnesses listed in this document, you need to do what you need to do to get
there. There is no excuse to be lazy or give patients the run around, or blame their issues on anxiety because an ego
gets in the way of simply saying “ I don’t know”. If you really don’t know, say that and then follow up with “but I will be
spending a lot of time trying to learn more about it for our next visit”. Under the resources section in this document, go
to studies and review the completed studies by this group and body politic. Then go and watch some of the webinars
or review articles through JAMA and BMJ. You can even join the Facebook group to read through patients' stories and
experiences. We encourage this.

Share information to Physicians who have a patient that is a Longhauler are not talking to their friends or colleagues about their findings
educate your (obviously while honoring hipaa). These discussions are needed since there are limited publications coming out on
physician friends and Longhaulers. Start some in office case studies and put out small publications or white papers amongst your peers.
colleagues. This is an emergent, time sensitive situation for us and we cannot wait years for research to come in. Be proactive.

Additionally, the patients physicians are not working as a team and talking to one another. My cardiologist should be
talking to my pulmonologist and rheumatologist and so on about my issues and plan of care. They should be
brainstorming together, bouncing ideas off one another, discussing other patient findings and piecing together the
puzzle. When no one talks to one another, we go in circles and everyone is thinking and doing something different
pointing the finger back at another specialty you just came from. Collaboration is key.
 4

Gold Standard Testing for Every Patient

1. Cardiac MRI: Myocarditis = top cardiac issuehttps://jamanetwork.com/journals/jamacardiology/fullarticle/2768916
2. Follow up Cardiac MRI w/ ECHO & Stress ECHO
3. Chest CT over X-Ray
4. Brain MRI w/ contrast
5. Bloodwork: Inflammatory, cardiac, clotting and functional markers
6. Autonomic and Neurological testing

The Eye-Popping Data on the Number of Longhaulers , Secondary Issues and Costs
https://docs.google.com/document/d/10-e7CIwcobAA7cSCRvSXXmBNtEa5n-6V_j5u13
2wogA/edit

Survey 3 “longhaulers experiences and needs” which focuses on effects on daily life
https://docs.google.com/document/d/1uKX3dCdUgeVjlwaOAJiIGa8HKK08c1lSU9vBQe
VY0yc/e
dit

Body Politic, Patient Led Research Team

https://www.medrxiv.org/content/10.1101/2020.12.24.20248802v2.full-text

InCellDX Longhauler Index Assay

https://www.biorxiv.org/content/10.1101/2020.12.16.423122v1.full.pdf

Covid Longhaul Groups discuss the Longhauler Index and its Significance
https://www.youtube.com/watch?v=bSObeeceZos&t=4s

Dr. Fauci discusses Long Covid, gives it a name, recent study findings 2/25/21- min 20
https://l.facebook.com/l.php?u=https%3A%2F%2Fptop.only.wip.la%3A443%2Fhttps%2Fyoutu.be%2FhsU3wLKzFJ0%3Ffbclid
%3DIwAR1lxASfGft9XsgIv60YpHAyAbiPkWXCTsHVPU7d4bkiZEgU72oKIEzjvYo&h=AT
1ac7xVlbV7Gvd7OEcSfTQy_LiGSCxJW5y48ldsCb07anlUiuL-gMvRn6QY6EUbEwav5a
tARWLVpSsdK_FZMWMCcT0WSbBpQ8bdIsrpNUVGJcTzavcrUg-Ym8Kh-E0nChEqzn
FDhdEHqR9nJ_o
 5

Diagnostic Testing by Specialty

Pulmonary Cardiac/ Cardiovascular Rheumatology

● Chest CT with and without contrast ● Echocardiogram ● MRI (on symptomatic area, suspicion
● Chest X-Ray ● Cardiac MRI for RA)
● Pulmonary Function Test (not just ● 12 Lead EKG ● Musculoskeletal Ultrasound
spirometry) ● Tilt Table Test ● Biopsy for Sjogren's Syndrome
● Appropriate blood work ● Stress Test (if medically safe to do) ● Appropriate blood work
● Appropriate blood work

Neurological Gastroenterology ENT

● Brain MRI with contrast ● Colonoscopy ● Basic Exam: ears, nose throat (may
● Brain CT ● Endoscopy be referred to allergist)
● Angiography ● Abdominal ultrasound ● Throat Endoscopy (may be referred
● EEG ● Gastric empty study to specialists)
● EMG ● Biopsy ● Hearing Test
● Neurologic exam ● Appropriate blood work ● MRI with contrast
● Neuropsychological exam ● Biopsy of lymph nodes
● CSF analysis ● Laryngoscopy
● Autonomic Function Test ● Phonatory assessment
● Biopsy for Small Fiber Neuropathy
● Appropriate blood work

Hematology Dysautonomia Specialist Infectious Disease

● Ultrasound ● Autonomic function testing (tilt ● MRI

● MRI table test, qsart, gastric empty ● Chest CT
● CT study,thermoregulatory sweat test, ● X-Ray
● Appropriate blood work urinalysis and bladder function ● Spinal Tap
test, ultrasound) ● Appropriate blood work
● Appropriate blood work

Hepatology Urology Ophthalmology

● Ultrasound ● Urodynamics study ● Basic Vision Test (pupils, retina, slit

● MRI ● Ultrasound lamp test, tonometry, age related
● CT ● Pelvic Exam (women) macular degeneration, cataracts,
● Biopsy ● Urinalysis optic nerve)
● Appropriate blood work ● Optic Nerve - may need to consult a
neuro-ophthalmologist

Dermatology Endocrinology Immunology/ Allergist

● Culture ● Ultrasound ● Allergen, MCAS testing

● Biopsy ● Appropriate blood work ● MRI
● Hair loss solutions ● CT
● Appropriate blood work
 6

Diagnostic Labs
Test Indication Test Indication
CMP & CBC Basic blood work: Anemia, leukemia, Amylase Inflammation of pancreas & salivary
inflammatory process, electrolytes, glands (mumps), biliary tract disease
kidney and liver function, and acid/ & bowel obstruction
base balance

BNP & Pro BNP Indicator of congestive heart failure, left Lipase pancreatitis
ventricular hypertrophy, acute MI,
hypertension, pulmonary hypertension,
acute lung dysfunction,, chronic renal
failure, cirrhosis

Troponin I & T Acute coronary syndrome, MI, Cardiac Lactate Dehydrogenase MI, liver disease, pernicious and
Predictor for ACS megaloblastic anemia, pulmonary
emboli, malignancy, musc dyst.

Homocysteine Risk factor for cardiovascular disease, ALT Liver disease, heart muscle damage
b12 and folic acid deficiency

D-Dimer Fibrinolytic activation and intravascular Amylase Inflammation of pancreas & salivary
thrombosis (clots) glands (mumps), biliary tract disease
& bowel obstruction

Factor 5 Leidein Increased risk of venous thrombosis Lipase pancreatitis

(clots)

CMP & CBC Basic blood work: Anemia, leukemia, Lactate Dehydrogenase MI, liver disease, pernicious and
inflammatory process, electrolytes, megaloblastic anemia, pulmonary
kidney and liver function, and acid/ emboli, malignancy, musc dyst.
base balance

BNP & Pro BNP Indicator of congestive heart failure, left AST MI, hepatitis, liver necrosis, cirrhosis,
ventricular hypertrophy, acute MI, liver metastasis
hypertension, pulmonary hypertension,
acute lung dysfunction,, chronic renal
failure, cirrhosis

Troponin I & T Acute coronary syndrome, MI, Cardiac CO2 Changes in body acid balance
Predictor for ACS

Homocysteine Risk factor for cardiovascular disease, Lipid Panel Cardiovascular disease, ischemic
b12 and folic acid deficiency event, atherosclerosis, metabolic
syndrome,

Iron & Total Iron Binding Iron deficiency anemia, Complete Urinalysis Infection, kidney and liver function/
hemochromatosis disease
Capacity

Iodine Thyroid hormone production, adequate Hemoglobin A1C Diabetes

dietary intake

Folate B12 deficiency, small intestine damage Phosphate Hypoparathyroidism, sarcoidosis,

vitamin d deficiency, renal tubular
acidosis, hypervitaminosis D,
Milk-Alkali syndrome
 7

Ferritin Hypochromic and microcytic anemia, Total Protein and Protein Protein abnormalities including
Iron deficiency anemia, iron overload monoclonal gammopathies
Electrophoresis

B1 (thiamine) Associated with chronic illness, TSH hypothyroidism

beriberi, branched chain amino acid
and carbohydrate metabolism,
irritability, apathy, generalized
weakness.

Metabolism of fats, proteins and T4 Free Hyperthyroidism, hypothyroidism, graves disease

B2 (riboflavin)
carbohydrates, mucocutaneous lesions
of the mouth and skin, corneal
vascularization, anemia, personality
changes

Reduces heart attack and slows Catecholamines Hypertension, orthostatic hypotension

B3
narrowing of arteries.

Metabolism of protein, fat and Acetylcholine Receptor Ganglionic Autoimmune Autonomic ganglionopathy,
B6 paraneoplastic AAG,autonomic
carbohydrates, AB neuropathy,autonomic nervous system
creation of red blood cells and dysfunction or failure
neurotransmitters, mood changes, skin
rashes, cracked and sore lips, sore
tongue, weakened immune function,
low energy, tiredness, tingling and pain
in hands and feet, seizures, high
homocysteine

B7 (biotin) Transfers carbon dioxide in the Angiotensin-1 Converting Sarcoidosis, gaucher's disease,
metabolism of fat,carbohydrates and lymphangiomyomatosis
Enzyme
proteins by functioning as an enzyme
cofactor, seborrheic dermatitis,
alopecia, myalgia, hyperesthesia,
conjunctivitis

B12 (cobalamin) Anemia, production of red blood Vascular Endothelial Growth Encourages growth of new blood
cells,proper functioning of nervous vessels. Tumors, Cancer, leaky blood
Factor
system, numbness, tingling, fatigue, vessels, showing up in covid patients
weakness, cognitive difficulties, as covid attacks the endothelium
memory loss, balance problems,
swollen tongue

Vitamin A (retinol) Vision, growth, cell function, renal Tryptase Anaphylaxis, acute allergen
failure, fat malabsorption, bone challenge, mastocytosis, Mast cell
fractures activation syndrome

Vitamin C Connective tissue metabolism, drug 24 hour Prostaglandin Mast Cell Activation Syndrome
metabolism systems, mixed-function
oxidase systems, impaired formation of
matured connective tissue, bleeding
into the skin, weakness, fatigue,
depression

Vitamin D (25-hydroxy total Poor absorption of vitamins, bone IGA Monoclonal iga myeloma, respiratory
disease, hypercalcemia and gastrointestinal infections and
immunoassay)
malabsorption, iga deficiency, ataxia
telangiectasia

Vitamin E (tocopherol) Neuropathy, interstitial malabsorption, Myasthenia Gravis Panel 3 Myasthenia gravis, skeletal muscle
bowel or pancreatic disease, chronic weakness and fatigability, thymoma,
 8

cholestasis, celiac disease, cystic thymic hyperplasia

fibrosis, interstitial lymphangiectasia

Vitamin K bleeding Striated muscle AB w/ reflex Myasthenia Gravis

to titer

Zinc Wound healing, immune function Phospholipase A2 Receptor Primary membranous nephritis
(autoimmune disease)
AB, ELISA

B2 (riboflavin) Metabolism of fats, proteins and Sars-Cov-2 AB Detection of previous covid infection
carbohydrates, mucocutaneous lesions
of the mouth and skin, corneal
vascularization, anemia, personality
changes

B3 Reduces heart attack and slows Prostaglandin E2 Inflammation, arthritis, fever,

narrowing of arteries. endometriosis, tissue injury,
pheochromocytoma, VIP producing
tumors, variety of cancers

Melatonin Impaired central nervous system IGA Monoclonal iga myeloma, respiratory
function, orthostatic hypotension, sleep and gastrointestinal infections and
disorders, depression, stress, malabsorption, iga deficiency, ataxia
schizophrenia, immunological disorders telangiectasia

ANA Choice Screen Rheumatic disease, lupus, connective Pancreatic Elastase-1 Measures exocrine pancreatic
tissue disease, sjogren's syndrome, function
scleroderma, polymyositis, crest
syndrome, neurologic SLE

Rheumatoid Factor Collagen vascular diseases such as Parietal Cell AB W/ Reflex Pernicious anemia
SLE, rheumatoid arthritis, scleroderma,
Titer
sjogren's syndrome, and leprosy,
tuberculosis, syphilis, malignancy,
thyroid disease, the elderly

Intrinsic Factor Blocking AB Binds to vitamin b12, pernicious SM AB Highly specific for systemic lupus
anemia erythematosus

DNA AB (DS) Crithidia, IFA Active systemic lupus erythematosus SM/RNP AB Found in patients with mixed tissue
and approximately 20% of patients with disease (having features of SLE,
mixed connective tissue disease scleroderma and polymyositis)

NK Cell Function CFS

Continue to Long Hauler Index Below

 9

Longhauler Index by Dr. Bruce Patterson: Findings

https://www.biorxiv.org/content/10.1101/2020.12.16.423122v1 https://covidlonghaulers.com/
IL-2 significantly elevated, IL-10 significantly elevated CCL3 significantly elevated, involved in T-Cell No evidence of
regulates the activity of acute inflammatory state, recruits exhaustion
white blood cells and activates polymorphonuclear
leukocytes

IL-4 significantly elevated, IL-13 - CCL4 significantly decreased B-Cell Significantly elevated
produced by mast cells
and induced differentiation
of naive helper T cells

IL-6 significantly elevated, IFN-y significantly elevated, CCL5 Significantly elevated regardless of CD14 Significantly elevated
secreted by macrophages produced by NK and disease severity
and stimulate the NKT cells as immune
production of neutrophils response
in bone marrow

IL-8 - sCD40L - TNF-a - CD16 Significantly elevated

GM-CSF significantly decreased, produces Monocytic Significantly elevated

neutrophil proliferation and Subset
maturation

New ICD-10 codes for the following COVID-19-related illnesses:

Z11.52 M35.81
Encounter for screening for COVID-19 Multisystem inflammatory syndrome

Z20.822 M35.89
Contact with and suspected exposure to COVID-19 Other specified systemic involvement of connective tissue

Z86.16 J12.82
Personal history of COVID-19 Pneumonia due to COVID-19

U08.9 U10.9
Personal history of Covid-19, unspecified Multisystem inflammatory syndrome associated with COVID-19,
unspecified
**confirmed or PROBABLE** that influences the person's health status
**temporarily associated with COVID-19: Cytokine storm, kawasaki-like syndrome,
pediatric inflammatory multisystem syndrome with COVID-19, MIS-C. Excludes
mucocutaneous lymph node syndrome (kawasaki M30.3)**

U09.9
Post-COVID-19 condition, unspecified

**allows the establishment of a link with COVID**

 10

What We are Seeing in Longhaulers

There are 6 comorbidities heavily intertwined in general and are now being very frequently found and diagnosed in LH’s: Postural
Orthostatic Tachycardia Syndrome, Myalgic Encephalomyelitis/ Chronic fatigue Syndrome, Autoimmune Disease, Fibromyalgia, Small
Fiber Neuropathy and Mast Cell Activation Syndrome. Two other genetic conditions to be noted are the prevalence of Mixed Connective
Tissue Disorders (mostly Ehlers-Danlos Syndrome) and the MTHFR gene mutation.

Dysautonomia (Dysregulation of the Diagnosis: Cardiologist, Electrophysiologist, Neurologist, Dysautonomia Specialist.

Autonomic Nervous System). The Physicians should recognize autonomic dysfunction by looking at the whole patient. The
most common forms being diagnosed signals of autonomic dysfunction to look for are: orthostatic intolerance (abnormal HR,
in Longhaulers are POTS -Postural BP or symptoms with standing), GI Dysmotility, Bladder Dysfunction, Abnormal Sweating,
Orthostatic Tachycardia Syndrome, Dry Eye/ Mouth, Temperature Sensitivity, Flushing, ED in males.
OI-Orthostatic Intolerance and OH-
Orthostatic Hypotension. Tests: Tilt Table Test-TTT, Orthostatic testing, ECG, Sweat Tests, Symptoms review,
Vascular Integrity Test.

With very limited physicians experienced ● A recent patient lead survey of 1,196 in Longhauler’s (Oct 2020) showed 1 in 3
with Dysautonomia, physicians must take Longhaulers had developed Dysautonomia.
it upon themselves to educate
themselves about Dysautonomia, its For Patients: http://dysautonomiainternational.org/page.php?ID=36
multiple forms, how to assess for it and For Physicians: http://dysautonomiainternational.org/page.php?ID=38
how to treat it. Physicians must stop Find a Specialist: http://dysautonomiainternational.org/map.php?SS=3
dismissing patients and telling them it is
Education Materials: http://dysautonomiainternational.org/page.php?ID=95
psychosomatic or anxiety.
Post-Covid Dysautonomia Webinar https://vimeo.com/459746130

POTS Symptoms Orthostatic tachycardia, palpitations, shortness of breath, lightheadedness/ presyncope,

Gi motility (33% too fast or slow), nausea, sicca, bladder dysfunction, exercise
You cannot have POTS and OH. These intolerance, sensitivity to heat or cold, sensitivity to light/ sounds, migraine, orthostatic
are mutually exclusive diagnoses based headaches, profound fatigue, weakness (even with normal emg), tremulousness,
on internationally accepted diagnostic dependent acrocyanosis, flushing, increased allergies & sensitivities, trouble
criteria. BP drops in 1/3 of POTS patients
during tilt, but not to the degree of
concentrating, altered sleep phases, esophageal dysmotility, peripheral neuropathy,
meeting the OH criteria. BP drops in chest pain, shortness of breath, hypovolemia, impaired sweating, iron storage deficiency,
POTS patients who have overlapping normotension or hypertension.
NCS which can be distinguished. ● 85% of POTS patients are female. 50% of POTS patients developed POTS after
an infection.
Because only ⅓ of POTS patients have a ● POTS patients have a similar quality of life as patients with CHF, COPD, and on
drop in BP, do not let your provider tell
you it’s not POTS because your BP didn’t end stage dialysis. 25% of POTS patients are so disabled they are unable to
drop, it doesn’t in 2/3rds. work.

OI Symptoms Altered vision, anxiety, exercise intolerance, fatigue, headache, palpitations, hyperpnea,
lightheadedness, sweating, tremulousness, weakness, nausea, neurocognitive deficits,
pallor, sensitivity to heat, sleep problems, vasomotor symptoms.

OH Symptoms Lightheadedness, blurry vision, weakness, fainting, confusion, nausea, hypotension

 11

ME/CFS Diagnosis: Infectious Disease, Primary Care,

Rheumatology. Criteria: substantial impairment in function
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome
accompanied by fatigue, post exertional malaise,
is a complex and debilitating multi-system, chronic unrefreshing sleep, and either cognitive impairment or
disease with a serious impact on one’s quality of life. orthostatic intolerance for >6 months. Other common
ME/CFS typically occurs post viral infection. symptoms are pain, flu-like symptoms including sore
throat and tender lymph nodes, sensory sensitivity, and
gastrointestinal symptoms. Symptoms can be made worse by
The severity of ME/CFS varies greatly from patient to mental or physical exertion or by upright posture
patient, with some people able to maintain fairly active similar to POTS.
lives. For others, ME/CFS has a profound impact.
About 25 percent of people with ME/CFS are Tests: There is no diagnostic test for CFS but your doctor
housebound or bed bound as a result of their illness. will order Complete blood count to help rule out leukemia,
For many, there is often a pattern of relapse and anemia, and lupus, Lyme disease, thyroid function, blood
remission. Most symptoms are invisible to others, which chemistry to make sure sugar levels and other measures of
health don’t point toward another possible cause, such as
makes it difficult for family members, friends and the
metabolic syndrome, and urine tests.
public to understand the challenges of the disease.
● Between 836,000 and 2.5 million Americans suffer from
Main Page: https://solvecfs.org/ ME/CFS[2] and estimates vary from 17 – 24 million
Patient and caregiver information: people with ME/CFS worldwide. Although research has
https://solvecfs.org/research/patient-and-caregiver-resources/
shown that ME/CFS is about two to four times more
Become an advocate/ what’s in the works:
likely to occur in women than men[3], ME/CFS strikes
https://solvecfs.org/advocacy/
Medical Education and Awareness: people from every age, racial, ethnic, and
https://solvecfs.org/medical-education-and-awareness/ socioeconomic group. Some studies show that ME/CFS
US ME/CFS Clinician Coalition Website may be more common in minority groups.
https://mecfscliniciancoalition.org/ ● Common comorbidities with CFS are Fibromyalgia,
Batemanhorne Center https://batemanhornecenter.org/ Orthostatic intolerance, Irritable bowel syndrome,
Mast cell activation syndrome, Ehlers Danlos
CDC https://www.cdc.gov/me-cfs/index.html
syndrome, Sleep apnea, Food intolerances,
https://askjan.org/disabilities/Chronic-Fatigue-Syndrom
Interstitial cystitis, Temporomandibular joint
e.cfm?csSearch=2501332_1 disorder, Chronic pelvic pain, Multiple chemical
sensitivity disorder.
https://drive.google.com/file/d/1SG7hlJTCSDrDHq
vioPMq-cX-rgRKXjfk/view

CFS Symptoms Chronic fatigue >6 months, post exertional malaise (PEM),
unrefreshing sleep and other sleep problems, memory,
concentration and cognition problems, pain in the muscles,
joints or headaches, light sensitivity and chills, abdominal
issues like stomach pain, bloating and nausea, and sinus/ nasal
problems, swollen glands tender lymph nodes and sore throat.
Some of these symptoms can be made worse by standing up,
similarly to POTS.
 12

Autoimmune disease: occurs when your immune Diagnosis: Rheumatologist, Endocrinologist,

system begins to attack your body. In an autoimmune Gastroenterologist and Dermatologist may diagnose your
disease, the immune system mistakes part of your body, autoimmune disease. Diagnosis is usually based on
like your joints or skin, as foreign. It releases proteins symptoms and blood tests.
called autoantibodies that attack healthy cells.
Longhaulers seem to have developed AI disease due to Tests:Antinuclear antibody tests, Autoantibody tests,
the immune systems chronic over reactive response. CBC, Comprehensive metabolic panel, C-reactive protein
(CRP), Erythrocyte sedimentation rate (ESR), Urinalysis,
The most common AI Diseases being triggered in biopsies, imaging/ molecular imaging.
LH’s from Covid are:
Rheumatoid Arthritis ● Longhauler’s are, according to a recent patient
https://www.aarda.org/diseaseinfo/rheumatoid-arthritis-ra/ led survey from Oct 2020,, developing
Peripheral Neuropathy autoimmune diseases at a rate of 1 in 5.
https://www.aarda.org/diseaseinfo/peripheral-neuropathy/ ● Autoimmune Diseases can affect all parts of the
Lupus body, just like Covid-19. Covid-19 has left
https://www.aarda.org/diseaseinfo/lupus/ Longhauler’s in a chronic inflammatory state
Sjogrens which leads to the immune system to attack the
https://www.aarda.org/diseaseinfo/sjogrens-syndrome/
body instead of the virus. It is not clear why
Vasculitis
https://www.aarda.org/diseaseinfo/vasculitis/
everyone who is developing Autoimmune
Sarcoidosis Disease post-Covid are not developing the same
https://www.aarda.org/diseaseinfo/sarcoidosis/
form of AI disease.
Amyloidosis
https://www.aarda.org/diseaseinfo/amyloidosis/ Other AI Diseases coming up in LH testing, but
uncommon: complex regional pain syndrome (CRPS),
Of Interest and common, but not 100% considered diabetes, chronic inflammatory demyelinating
autoimmune diseases: polyneuropathy (CIDP),polymyalgia rheumatica,
Chronic Fatigue Syndrome, POTS/ AI Dysautonomia, rheumatic fever, antiphospholipid syndrome, hashimoto
MCAS, Fibromyalgia (listed elsewhere) thyroiditis, mixed connective tissue disease (especially
Ehlers-Danlos Syndrome- note this is genetic and you
are born with it), kawasaki disease, interstitial cystitis,
guillain-barre syndrome, Giant Cell Arteritis (Temporal
Lobe), Eosinophilic Esophagitis, Ankylosing Spondylitis,
Myasthenia Gravis, transverse myelitis.
 13

Fibromyalgia is a chronic disorder which is Diagnosis: A family practice physician, internist, or

characterized by widespread pain, tenderness and rheumatologist can diagnose fibromyalgia. In addition to
fatigue. It is difficult to diagnose because most of chronic, widespread pain and tenderness, the 2010
the symptoms mimic those of other disorders. diagnostic criteria require that fibromyalgia patients have
significant symptoms of fatigue, unrefreshed sleep, and
Fibromyalgia is NOT an autoimmune disease, cognitive dysfunction (difficulties with thinking and
however it does accompany other autoimmune remembering), along with numerous somatic symptoms.
rheumatic and endocrine diseases. However, fibromyalgia is a diagnosis of exclusion and
patients must be thoroughly evaluated for the presence
of other disorders that could be the cause of symptoms
● Fibromyalgia affects about 4 million US adults, before a diagnosis of fibromyalgia is made.
about 2% of the adult population.
● Higher rates of other rheumatic conditions. Tests: Doctors usually diagnose fibromyalgia using the
Fibromyalgia often co-occurs with other types of patient’s history, physical examination, X-rays, and blood
arthritis such as osteoarthritis, rheumatoid work. All patients require a thorough history, physical
arthritis, systemic lupus erythematosus, and examination, and laboratory evaluation before they are
ankylosing spondylitis.. diagnosed with fibromyalgia.
● Sex. Women are twice as likely to have
fibromyalgia as men. Approximately one third of patients identify a specific
● Stressful or traumatic events, such as car event (eg, illness, stress or injury) that precipitated the
accidents, post-traumatic stress disorder (PTSD) development of fibromyalgia.
● Repetitive injuries. Injury from repetitive stress on
a joint, such as frequent knee bending.
● Illness (such as viral infections)
● More hospitalizations. If you have fibromyalgia https://www.cdc.gov/arthritis/basics/fibromyalgia.htm
you are twice as likely to be hospitalized as https://www.medscape.com/answers/329838-18857/what-are-the-di
someone without fibromyalgia. agnostic-criteria-for-fibromyalgia?src=ppc_google_rlsa-traf_mscp_kal
● Lower quality of life. Women with fibromyalgia eo-pilot_md_us
may experience a lower quality of life.
● Higher rates of major depression. Adults with
fibromyalgia are more than 3 times more likely to
have major depression than adults without
fibromyalgia.
● Higher death rates from suicide and injuries.
Death rates from suicide and injuries are higher
among fibromyalgia patients, but overall mortality
among adults with fibromyalgia is similar to the
general population.

Fibromyalgia Symptoms Fatigue, tenderness, pain, sleep disturbances, morning

stiffness, anxiety, depression, headaches, problems with
thinking, memory and concentration, numbness and
tingling in hands and feet, pain in the face and jaw
including tmj, bloating, constipation and IBS.
 14

Mast Cell Activation Syndrome (MCAS): is a condition Diagnosis: physicians that treat MCAS could be
in which the patient experiences repeated episodes of immunology, hematology, dermatology,
the symptoms of anaphylaxis – allergic symptoms such gastroenterology, pediatrics, neurology,
as hives, swelling, low blood pressure, difficulty endocrinology and pathology.
breathing and severe diarrhea. High levels of mast cell
mediators are released during those episodes. The Test: serum mast cell tryptase and in urine levels of
episodes respond to treatment with inhibitors or N-methylhistamine, 11B -Prostaglandin F2α
blockers of mast cell mediators. The episodes are (11B-PGF2α) and/or Leukotriene E4 (LTE4), thorough
called “idiopathic” which means that the mechanism is history for clinical diagnosis based on symptoms.
unknown - that is, not caused by allergic antibody or
secondary to other known conditions that activate MCAS is very common in POTS
normal mast cells.

https://www.aaaai.org/conditions-and-treatments/relate
d-conditions/mcas

https://tmsforacure.org/tests/

MCAS Symptoms Heart:tachycardia, hypotension and syncope.

Skin: itching, hives, swelling and flushing.
Lung: wheezing, shortness of breath and harsh noise
when breathing (stridor) that occurs with throat swelling.
GI: diarrhea, nausea with vomiting and crampy
abdominal pain.
 15

Small Fiber Neuropathy: Small fiber neuropathy is a Diagnosis: A neurologist treats SFN. Diagnosis is
condition characterized by severe pain attacks that typically based on history, clinical examination and supporting
begin in the feet or hands. Some people initially experience laboratory investigations.
a more generalized, whole-body pain. The attacks usually
consist of pain described as stabbing or burning, or Tests: Skin biopsy, reflex testing, blood and genetic
abnormal skin sensations such as tingling or itchiness. In testing, imaging, EMG, nerve conduction studies.
some individuals, the pain is more severe during times of
rest or at night. People affected with this condition may also ● Experts estimate that about 40 million
have a reduced ability to differentiate between hot and cold. individuals in the US may have peripheral
However, in some individuals, the pain attacks are
neuropathy of both types—large fiber and small
provoked by cold or warm triggers.Small fiber neuropathy is
considered a form of peripheral neuropathy because it fiber.
affects the peripheral nervous system, which connects the ● Diabetes is the most common identifiable cause
brain and spinal cord to muscles and to cells that detect of the SFN, but many other causes and
sensations such as touch, smell, and pain. conditions are linked to the disease as well.
Restless leg syndrome is often associated with
https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/#resour small fiber neuropathy, for example, as is having
ces pre-diabetes, rheumatoid arthritis, hepatitis C,
https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics Parkinson’s disease, chronic kidney disease,
/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html and fibromyalgia.
● The use of statins, chemotherapy, and alcohol
https://www.healthline.com/health/small-fiber-neuropathy
has been linked with SFN. In many patients, no
underlying causes are found, however.

SFN Symptoms Burning, tingling, prickling, short bursts of pain, loss of

sensation, urinary or bowel problems, tachycardia,
palpitations, dry eyes or mouth, abnormal
sweating,sexual dysfunction, sharp drop in blood
pressure upon standing (orthostatic hypotension),
which can cause dizziness, blurred vision, or fainting.
 16

Body System Findings

Heart/ Cardiovascular Arrhythmia, myocarditis,endocarditis, pericarditis, heart failure, myocardial

infarction, ventricular and atrial hypertrophies, mitral and tricuspid valve
regurgitation (especially in women), hypertension, hypotension,
thrombosis, blood pooling, inappropriate vasoconstriction and dilation,
anemia, scarring, cardiomyopathy.

Lungs/ Pulmonary Pneumonia, Scarring, ground glass opacities, fibrosis, atelectasis,

pneumothorax, poor diffusion, pleural effusion, pleuritis, shortness of
breath, hypoxia and silent hypoxia, rapid and shallow respirations, exercise
intolerance, sleep apnea and hypopnea, pulmonary embolism, asthma and
copd “like” issues.

Brain/ Neurological Stroke, aneurysm, lesions similar to MS, swelling, temporal lobe arteritis,
tremors, headaches, coordination issues, brain fog, memory issues,
concentration issues, inability to find their words & dyslexia, losing thought
mid sentence, confusion, temporary partial paralysis, numbness, tingling,
neuropathy, autonomic dysfunction, chronic fatigue, insomnia and other
sleep issues, urinary and bowel issues, vision difficulties and disturbances.

Kidneys and Liver/ Renal & Hepatic Renal & Hepatic insufficiency & enlargement, fat build up, infections,
kidney stones, increased urine protein, jaundice, rhabdomyolysis, frequent
urination, urinary retention.

Gastrointestinal Delayed and increased gastric motility, diarrhea, constipation, food and
medication sensitivity, nausea, vomiting, bloating, gastritis, eosinophilic
esophagitis, growths along the tract should be biopsied.

Immune & Lymphatic System Autoimmune disease (info in this doc), .swollen and tender lymph nodes.
This should be monitored. Lymph Nodes growing in size should be
biopsied. Follow imaging with appropriate blood work.

Mental Health Anxiety & Depression: Pandemic, loss of employment, inability to perform
job, attempting to return to job post time off, strained relationships,
confined to house, new chronic illness, uncertain future, no current help or
cure, upcoming doctors appointments post medical gaslighting.
PTSD: Medical gaslighting dismissing our experiences and illness.
Hospital experience during acute or post covid.
 17

Preparing for & Advocating at Doctors Appointments

You are the only person who can truly fight for you and what you need. This is a time that requires you to be strong, driven
and persistent. Do not give up, fight for your quality of life and be educated on your conditions. You depend on you.

Documentation Longhaulers have reported over 200 symptoms. Obviously not everyone experiences all of them. Documenting
your symptoms every single day is overkill and often adds a lot of stress, which we want to avoid. Doctors will
want to know what you experienced during your acute infection, which personally, seems to be completely
irrelevant to post-COVID syndrome and symptoms. Have a list of those symptoms. Most importantly, create a list
of ALL of your symptoms. You can categorize them in two ways: frequency, as in how often that symptom occurs
( 1 day a week, a handful of times a month, daily, etc) & severity, as in what symptoms are the worst and affect
daily life the most. I prefer the latter as it helps us work towards a solution to the symptoms that diminish quality
of life. So again, list of acute infection symptoms, list of all symptoms, then a list of the symptoms that affect you
most. Additionally, include a list of your physicians, diagnosis, out of range blood work, medications and tests.

Organization Put in the time and buy the binder! Some doctors hate this but most LOVE IT. This makes your life and that of
your medical providers so much easier. It is an efficient way to locate materials you need on the fly, keep things
chronologically ( to show trends), and be able to scan/ fax to the office to preload your doctor so your entire
appointment isn't spent reviewing, but rather working on solutions. Here are the sections to include:
1- includes the lists you should create under the above documentation section. Additionally, include a list of
pending tests/ tests you would like, potential treatments you would like to try and any verbal physician
recommendations to circle back to.
2- includes all of your imaging records (MRI, CT, PET, X-Ray, ECHO, EKG etc..) Always ask for a copy of the cd
before you leave the facility at the time of the procedure. Most places have a patient portal. Register, and you
should be able to print your reports. If not, swing by after a few days and request a copy of the report and include
it in the binder. Place a plastic sleeve in the binder in this section to store the imaging cd’s. Some doctors like to
review it themselves vs go off the report.
3- includes all of your lab work. Companies like Quest and Labcorp have a patient portal where you can review
and print off everything. Do this. If you do not use these companies, it is imperative you request copies from the
lab or doctors office where you completed this blood work. The same goes for any biopsy results.
4- includes all of your supporting evidence and educational materials. Studies, info-posters, groups, websites,
news articles, etc.

Education Covid is brand new, as are many of the new diagnoses you are being diagnosed with post-COVID to you. YOU
must be able to talk about these illnesses with confidence and as firm as an understanding as possible. We have
been 5 months ahead of any and all research or announcement coming out of the health organizations. This is
important because physicians like to wait until there is scientific evidence from an accredited journal or
organization/ university before they take action. The patient led research from our group, body politic and Indiana
University is groundbreaking information and the perfect insight into the world of Long Covid. The amount of
information also available in groups like ours is a gold mine. Physicians are encouraged to join because they will
be exposed to thousands of people;s experiences which will help them become a better clinician. Many
physicians have a specialty and stick to it. But with illnesses like the 6 mentioned earlier, the lack of experience
and knowledge about them is mind blowing, and you will have to do the work to educate your physician or push
them to educate themselves on it. Use your knowledge and documentation to fight for what you need: imaging,
bloodwork, referrals to other specialists, diagnosis, treatment/ medications. This section should include:
1- Information about PASC/PCS: Include the patient led studies. Include other studies from JAMA, BMJ, anything
else that provides evidence of Long Covid, its chronic effects, the findings in LH’s and other conditions it is
triggering.
2- Information and studies on the conditions COVID has triggered: POTS/Dysautonomia, ME/CFS, MCAS,
 18

Autoimmune Disease, Fibromyalgia, Small Fiber Neuropathy, etc.Try to also show the relation to COVID.
Encourage the use of the new ICD-10 Codes for further testing and validation.
3- create a list of websites and webinars surrounding Long Covid for your physician and encourage them to
watch them should they require more information and access to education on the topic.
4- you no longer need to be part of a trial or study for your Long Covid information to be included and sent to
WHO. WHO just released these forms that your doctor can fill out and send in. This is a great idea to do and you
should push for it, because the more information they get about the post-COVID issues we are facing, the better
the research agendas will be, funding can be better allocated, and it will help provide a more accurate count of
how many Longhaulers there are. Here is the website, enter then click download.
https://www.who.int/publications/i/item/global-covid-19-clinical-platform-case-report-form-(crf)-for-post-covid-cond
itions-(post-covid-19-crf-) See resources section for more.

Persistence If you are not being listened to or believed, or your physician will not accept your issues related to COVID,
provide them your documentation and evidence. If they still remain standoffish, FIND A NEW DOCTOR. Your
time and health is of utmost importance and someone who doesn’t understand the issue, believe it, believe you
or simply doesn’t care is NOT going to help you in any way. Medical gaslighting is a tremendous issue for
Longhaulers and those with chronic illness. Do not stand for it. Demand testing and labs that other Longhaulers
are getting (listed in this document) and finding issues with. Pre-COVID and Pose-COVID medicine is completely
different, and does require some exploration. Early treatment is always key to having a better outcome.
Physicians take an oath to “Do No Harm” and there is heavy conversation about this. Some physicians are afraid
to deal with us and do nothing, while others are eager to learn and try to help and try things. In the opinion of
most, do nothing, does harm. Patients would much rather you try, than do nothing. Demand referrals to other
specialists, especially if your insurance requires it. Do not wait, as most specialists are now on months long
waiting lists. If your physician does not want to run tests or labs, ask them to document that in your chart and ask
for a copy before you leave. It's petty, but it is a way to get them to order the testing, or a reason to report them
and find a new doctor. You are not here to make friends, you are here to recover and return to health and regain
quality of life, not only for you, but your family, friends and employment. It can also be beneficial to have a doctor
you have a good relationship with and who has a good understanding of post-COVID issues to reach out to your
other doctors for some “pushing”. Many doctors are much more willing to listen to a peer than a patient.
 19

Advocating In The Workplace

You are struggling at work & find yourself having to take lots of breaks, and calling out sick frequently. You are getting pressured from
your superior/ boss/ hr and/ or your relationships with co-workers are suffering. You feel like the quality of your work has decreased.

Recognition ● Recognize the situation and be honest with yourself about your struggles.

Be Honest ● Be honest with your co-workers and your boss about what you are experiencing, both at work and in daily life.
Sometimes people have no clue what is going on in someone else's life.
● Express that your job is important to you and that you always give your best, but lately, your health is having a
negative impact on your performance.
● Ask your coworkers and boss for understanding. Having an open dialogue and building relationships will be helpful,
and maybe others will offer to help you/ lighten the load.

Discuss a plan ● Decrease working hours, work from home, switch shifts, temporary demotion
● Ask for accommodations, ie: frequent breaks, less physical work, switching to desk work, a place to sit, allowing
water/ food at your workstation
● Explore your jobs FMLA, Short-Term or Long-Term Disability and ADA policies. If infection occurs in the workplace,
file a workers comp claim asap, as filing post termination or quitting will likely not be possible.
● You need to quit. Have an honest conversation and ask if there is any possibility of returning if health improves and
ask for a letter of recommendation just in case.

You have been fired after being given accommodations, not having an open dialogue with superiors, or after suspected
discrimination for your condition.

What Happened ● Did you have an open dialogue with your boss or HR? If YES, were accommodations made when requested? Did
they try to work with you and help with work load and shift changes or location/ workstation changes? If NO, it is
worth a try to attempt to explain things now, but it is likely too late to change anything.
● If you provided doctors notes, and requested accommodations which were not granted, seek advice from an
attorney.
● You were given accommodations, but still could not perform your job well or were still missing a lot of time off work.

Benefits ● Did you request FMLA, ST or LT Disability or Workers Comp through your employer? Was it granted? If not, why?
Request all the documentation you can get. Seek advice from an attorney.
● Were you allowed to use the remaining sick or vacation days?
● If you are unable to work, discuss filing for SSDI with an attorney, but be aware there is a requirement of being out of
work for 12 months before being eligible. You will need vast cooperation from your physicians for this.
● If you can work in some capacity, file for unemployment asap while you are seeking employment.

Discrimination ● Were your requests for accommodations denied?

● Was your claim of workers comp, ST, LT or FMLA denied?
● Are you a minority in race or gender?
● Did you discuss your medical condition at work, and did people make comments about it, accuse you of not being
able to do your job as a reason for termination or make any other slanderous remarks about your health condition?
● Were you able to perform your job well if given accommodations requested and granted?
● Did you have a clean work record? No missed days, never late, completed quality work, no disciplinary issues and
were fired?
● Did you contract Covid-19 at work and speak out about it, or alert others to negligence or issues surrounding the
workplace infection?
SPEAK TO AN ATTORNEY! Many can be found on a contingency basis.
 20

Advocating With Friends and Family

You have a great Let them in. Be vulnerable and open up about your struggles, experiences, fears and hopes. Be honest about
support system how you feel and what limitations you face both physically, emotionally, socially, in the workplace etc.
Create a plan for the times where you need a break or need help. Discuss a workload expectation for home life,
the kids, chores, etc. Have a plan for days where there will be doctors appointments or testing and help them
understand that these events are heavily fatiguing and stressful and recovery time after will be necessary.

Doubtfulness Some Longhaulers are dealing with dismissiveness, friends and family that are doubtful their issues are covid
related or as chronic or severe as they say they are and are putting a lot of pressure on Longhaulers to be
“normal” again. While some of this is just ignorance, some of this is denial. No one wants to see someone they
care about chronically ill, and it's a long road to acceptance, especially with something like covid which has no
rules and no timeline.
● Invite these people to spend a few days with you to see what you go through. Take them to doctor
appointments if allowed, require them to go food shopping with you or watch you attempt to do
household chores.
● Show them medical records. Show them the patient led studies, and have them read through some of
the group posts and gain an understanding of just how many are affected and suffering and how they
are suffering. Millions of people didn't wake up and stage a hoax to pretend to be sick. Have them watch
some of the patient PSA’s put together and webinars to educate members.
● At the end of the day, you will not convince everyone, and more importantly, you shouldn't have to. Drop
the dead weight. I know it is easier said than done, but stress is a major contributor to relapses/ flares
and chronic inflammatory states.Your main focus is to get back to good health, not only for you but also
for your family, your kids, your job and your quality of life.

Grief It is normal to be experiencing this. People are experiencing grief because:

● We are in a pandemic, and they make up the pandemic patients
● They have lost pieces or all of who they once were due to their illness
● They have lost jobs, hobbies and time in general
● They have strained or lost relationships with friends, family, coworkers, etc
● They feel like absent parents or even absent children, even to their pets
● People have lost their homes and cars they have worked hard to obtain
These emotions are natural and what you are feeling is very real. Please discuss these things with a trusted
support system. If you do not have one, please seek out someone in the group that you can chat with or a
medical professional.

Abandonment Unfortunately many Longhaulers have faced many kinds of abandonment. They have lost friends and family,
including Covid illness being the cause for breakups and divorces, having children removed or less time with
them, physicians firing them as patients and work friends or employers themselves walking away.
● This is really hard. It is not an easy thing to go through and you need to remember that you are worthy,
your feelings and experiences are valid and you deserve better.
● Sometimes letting the toxic things go is what is best for everyone. If someone walked away from you in
your time of need, they did not have your best interest in mind. Stress is a major contributor to our
post-COVID condition and limiting that is the best thing you can do for yourself which goes hand in hand
with being your own advocate.
● You did not do anything wrong. You did not bring this on yourself, you did not make yourself sick, you do
not want to be sick. This illness is out of your control. Focus on your journey back to health.
 21

Reinfections and Reporting Loopholes

Reinfections ● Reinfections are happening a lot more than you know about, mainly because of a reporting loophole and because many
Longhaulers may mistake it as a relapse or flare and fail to get tested.
● People being reinfected vary. Some are patients only 3 months post initial infection, some are a year post initial infection
and the rest fall in between.
● Antibodies, according to our study, have little to no significance in reinfection. We are seeing people who still have
antibodies, being reinfected. We cannot speak to if this is because of titer levels of antibodies or due to the new strains
circulating that make people more vulnerable to reinfection. Keep in mind, some people never even developed
antibodies and some of these people never developed antibodies post two vaccinations which is its own topic!

Open Study (results as of 1/11/20):

Read Criteria/ Participate Here https://docs.google.com/forms/d/1uW3JhYXEIcVntoHLyIOfI8iMv-Hojc9PyrA2C_3Wx30/edit
● Time between positive tests: 12% under 2 months, 19% 3-4 months, 38% 5-6 months, 19% 7 months, 12% 8-9 months.
● 75% reported having the same symptoms they had the first time, but with some new symptoms added in while 19%
reported completely different symptoms.
● 50% said their symptoms the second time were less severe, while 19% said symptoms were the same, 6% said their
symptoms were moderately worse and 19% said their symptoms were significantly worse.
● Hospitalization for the second infection increased by 7%
● 31% never developed antibodies after their first infection. 12.5% were 1-4 months out from their positive antibody test
and 12.5% were 5+ months out from their positive antibody test when infected a second time. 6% still NEVER developed
antibodies after their second infection.
● 6% were positive for antibodies when they were infected a second time.
● 63% were exposed to a known positive case when they were reinfected with 48% stating they were exposed to a high
viral load.
● 69% were a longhaueler from infection 1 and remained a longhauler post infection 2, 12.5% were a longhauler from
infection 1 but no longer a longhauler from infection 2, 12.5% were not a longhauler from infection 1 but are a longhauler
from infection 2, 6% were never a longhauler from either infection.

Moral of the story: double mask, avoid crowds and indoor spaces, wash your hands and act like you were never infected
and you are high risk. Now is not the time to be complacent. Especially since about 25% report more severe disease than
the first infection and 69% remained Longhaulers after their second infection.

Reporting Loophole ● Genetic Sequencing in the US has severely lagged. It wasnt until November 2020 when this became of interest and
sadly, we are only performing 750 genetic sequencing tests from states and local jurisdictions per week and 6,000 per
week from commercial labs. Thats only 6,750 genetic sequencing tests per week compared to how many covid tests per
week? This is not acceptable.
https://www.cdc.gov/coronavirus/2019-ncov/cases-updates/variant-surveillance/genomic-surveillance-dashboard.html
● There have been reports of reinfections (only discussing vetted occurrence) since July 2020. No one would listen to
these patients. It was not being reported. Reinfections are becoming more and more common, tens to hundreds per day
we are seeing int he groups, yet the official numbers represent nothing near this. Why? Genetic sequencing.
● In order to be counted as a reinfection, both of your positive covid tests must have undergone genetic sequencing. This
is an issue because this was not being done early on, really even until November, and it is still barely being done now.
Many states are not required to perform genetic sequencing, even for suspected reinfections. This should be criminal.
This information is imperative to public health, and potentially, the efficacy of vaccines and immunity.
● Additionally, they require that tests should be 3 months apart and have 2 negative tests in between the positives and the
genetic sequencing show two different strains. A few things here: 1- you can be reinfected in less than 3 months. 2- your
not doing genetic sequencing 3- if there are 3 months and 2 negative tests in between my positive, why does it matter if it
is the same or different strain than the first time? Yes, there is talk about viral persistence, but we have NOT been able to
provide data on reactivation capable of being contagious and replicating enough to cause positive tests. Everything
about this is designed to allow for not reporting cases of reinfection, and that needs to stop...NOW

The state reporting loophole needs to be banned and all tests, if not at least 50% should be undergoing genetic
sequencing. This will help prevent the spread of Covid, potentially identify strains that can evade the vaccines, and also
potentially link certain strains with disease severity or longhauler issues and symptoms.
 22

Contributing

Without your help, we get nowhere. All hands on deck!

● Participate and seek out all research opportunities you can find and share them widely in the
Research groups. Research typically takes years if not decades. Longhaulers need immediate help, so
by having the masses contribute, the more likely we are to receive help and solutions sooner.
● Research opportunities may be local, in person or online. They may be smaller case studies,
University or hospital run and can also be run by health organizations like WHO, CDC, NIH or
private labs and organizations.
● Patient led research has been leading the way and is constantly 5 months ahead of any
research or news coming out of the above mentioned bodies. Please contribute to the
patient-led studies we and other groups like body politic run. We are sometimes able to get
our information from the studies in front of the right people who can do “official and
recognized” research and publish their findings. Many times we are introducing new things to
them they were unaware of, which speeds up the process.
● Go to the resources section in this document and check out the studies page for completed
studies and enrolling studies. Please note, not all will be listed, please keep an eye out for
others.

● Numerous voices, actions and strong persistence is needed in advocacy. Without advocacy,
Advocacy no one would know who Longhaulers were, that there were prolonged symptoms of COVID,
we would not have patient-led surveys, our groups, this group, the Long Covid Alliance,
legislative changes and creations, research, media coverage and so on.
● There are many ways to be an advocate: Join an advocacy group, provide support to other
Longhaulers, help your admin/ mods when they request your help on projects and studies,
speak out to the media, speak out about your experiences to others, even if not Longhaulers,
speak to doctor and provide them information on Longhaulers/ post-COVID syndrome, post
information on your social media, post information on bulletin boards at work or school
campus, brainstorm on solutions, create local groups and do things at the local level like
contacting your local representatives and senators, your mayors, you local hospital systems
and fundraise to help the overall efforts.
● It takes a village has now become it takes the world. Lets do this!
● CONTRIBUTETO OUR COVID-COMPETENT PROVIDERS LIST and help other Longhaulers find
local doctors who get it and care or visit the list and find one yourself!
Contribute a provider to the list: https://bit.ly/COVIDCompetentProviders
View the growing list of COVID-Competent Providershttps://bit.ly/OFFICIAL-LIST-COVIDCompetentProviders

Assistance Programs
Each state and sometimes each county will have different programs and requirements for the programs. You are
encouraged to go to both your county and state websites to locate local resources available to you.
● State or Federal Unemployment
● Food Stamps
● Food Banks
● Rent and Utility Relief and Assistance Programs
● Housing Assistance or Mortgage Deferment Programs
● Credit Card Deferment Programs
● Child care Assistance Programs
● Disability
https://www.benefits.gov/categories/Financial%20Assistance
https://howtogeton.wordpress.com/ (Disability tips)
 23

Current Projects
Long COVID Alliance, Co-Founders https://longcovidalliance.org/

COVID Competent Provider List Contribute a provider to the list: https://bit.ly/COVIDCompetentProviders

View the growing list of COVID-Competent Providers https://bit.ly/OFFICIAL-LIST-COVIDCompetentProviders

Reinfection Study https://bit.ly/C19ReinfectionSurvey

Creating a Charity TBD

Creating a Website TBD, calling all web developers who would like to volunteer - Covid-19LonghaulerAdvocacyProject.org

Information Posters & Videos Calling all videographers who would like to volunteer

Resources
Long COVID Alliance- Website https://longcovidalliance.org/
Accomplishments, Partners, NIH Letters https://bit.ly/LongCOVIDAllianceLaunch

Studies: Completed and Enrolling https://docs.google.com/document/d/1iyfXbtQdYpd4Y7P2_w2SeVX5R9KtSdSFnAHuPrY-7vk/edit?usp=sha

ring

Webinars and Videos https://docs.google.com/document/d/1Co-G_YoQLxaItmxvIzZm9s5u244baqV3i_E-c9BWzWI/edit

Websites: Education and Support https://docs.google.com/document/d/1PfvyuRX8dbbk0AA3bl3NC-ZGFEe89UWaBHLpzX71mak/edit?usp=s

haring

https://www.who.int/publications/i/item/global-covid-19-clinical-platform-case-report-form-(crf)-for-post-covid-conditions-(post-covid-19-crf-)
WHO Case Reporting for Physicians (hit download)

Our Members Advocating in the Media https://docs.google.com/document/d/1wyXeQSNNXBQKplE4La8lKO9FbeeBVe1r0fgpsM_nyws/edit

Post Covid Care Centers https://docs.google.com/document/d/1gS5Wbax3RG_ATO41VAD4YWHn2cLeanZKaasoc-sm824/edit

Covid Competent Providers List Find a Provider https://bit.ly/OFFICIAL-LIST-COVIDCompetentProviders

Contribute a Provider https://bit.ly/COVIDCompetentProviders

Top Hospital Systems by State https://docs.google.com/spreadsheets/d/1PeqtU7v3rtVrx44EP0Zo4K1ribYLZPDO/edit#gid=94700385

Write a Letter https://docs.google.com/file/d/1PVHsxKRDd5Wzd4wCp0xHGuYqTsusMYhA/edit?filetype=msexcel&fbclid=I

wAR2VH4g8EVbtuWftrNNvrJEQk7hcwZD4hM7p8fAW68PdHJPZZKGenDCUG1g
List of Congress Members and their contact info
Sample letter https://docs.google.com/document/d/18TVpfWoZp2Qk_qMRDFj_abk9dhYGDlkHAIRR8kfRYlg/edit?usp=sharing

Our Facebook, Twitter, Email and Website (coming soon) https://www.facebook.com/groups/Covid19LonghaulerAdvocacyProject

@C19LH_Advocacy
[email protected]
Covid-19LonghaulerAdvocacyProject.org

Information Posters (save and share) CLAP https://docs.google.com/document/d/1smE_N1ZscJpQP_lnCMwrfXa5YhGiZio2nZ38w02wdfs/edit?usp=sharing

DI https://docs.google.com/document/d/1c0E9pOJPjOcoTjkGMmHf_hIOWHWBKkKcdGDZEv3IgEE/edit?usp=sharing
SOLVE ME https://docs.google.com/document/d/1phlUVLgAPQYvcUdVRcrsB73f7YbGEw2XUBhPLye8Yrk/edit?usp=sharing
 24

Let’s Work Together, Contact Us!

● Media Requests
● Research Opportunities and Recruitment
● Member Education
● Physician Education
● Webinars
● Advocacy Efforts
● Questions, Corrections or Additions to this Document

Contact
Prefered method of contact: Karyn Bishof on Facebook (personal email can be shared after)
Group Email: [email protected]