Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID .

What is
PTLDS?

Post-Treatment Lyme Disease Syndrome (PTLDS) / Chronic Lyme / Persistent Lyme are names of a disease that results from an infection with Borrelia burgdorferi, which are carried by ticks.

2 million individuals

live with PTLDS

10-20%

of antibiotic-treated Lyme patients remain ill

Some patients get better

over time, but that may take years, if ever at all

A long-lived debilitating illness

Post Treatment Lyme Disease Syndrome

(PTLDS)​/​Chronic Lyme​/​Persistent Lyme are all names of a disease that results from an infection with Borrelia burgdorferi, which are carried by ticks. Although most Lyme disease cases can be cured in two to four weeks with antibiotics, for some cases several debilitating symptoms will remain and become PTLDS, Chronic Lyme or Persistent Lyme.

“An estimated 2 million individuals are living with PTLD in 2020, making it a significant public health concern. The cost of care for PTLD is likely to be profound, due to the chronicity of symptoms, their severity, and the large number of affected individuals. Due to the lack of a case definition or objective quantifiable biomarkers, public and private insurance does not recognize PTLD or bear the costs of this treatment, which are paid by patients themselves.

Better diagnostic tests to identify both acute Lyme disease as well as the transition to PTLD are urgently needed. Additionally, we need better definition of biomarkers that could be used as measurable treatment endpoints in clinical trials, which would lead to improved treatment. Since immune dysfunctions accompany long-term symptoms, more understanding of immune responses in both people who have recovered, as well as those who continue to be ill would help clarify the process of disease.

Hopefully, with improved definition of persistent symptoms and more effective treatment, few, if any, will progress to PTLD. “

By Mayla Hsu, Ph.D.
Director of Research and Science
Global Lyme Alliance
globallymealliance.org 

PTLDS is a multi-system disease

Symptoms

Lyme disease occurs in three stages: early localized, early disseminated and late disseminated. However the stages can overlap and not all patients go through all three. A bulls-eye rash is usually considered one of the first signs of infection, but many people develop a different kind of rash or none at all. In most cases, Lyme symptoms can start with a flu-like illness.

If untreated, the symptoms can continue to worsen and turn into a long-lived debilitating illness.

Kindly contributed by the Global Lyme Alliance (globallymealliance.org)

Most Common Symptoms

Stage 1: Early Localized Disease

Symptoms with early localized (or acute) Lyme disease may begin hours, days or even weeks after a tick bite. At this point, the infection has not yet spread throughout the body. Lyme is the easiest to cure at this stage. Symptoms may include:

Skin rash, which may or may not look like a bull’s eye

Flu-like illness, including chills and fever

Fatigue

Headache and stiff neck

Muscle soreness and joint pain

Swollen lymph nodes

Sore throat

Stage 2: Early Disseminated Lyme

Early disseminated Lyme may occur several weeks or months after the tick bite. Bacteria are beginning to spread throughout the body. In addition to flu-like symptoms, this stage is often characterized by increase in symptoms such as:

Chills

Fever

Headaches

Fatigue

Pain, weakness or numbness in the arms, legs

Vision changes

Heart problems, such as palpitations, chest pain

Rash may appear on body

Facial paralysis (Bell’s palsy)

Stage 3: Late Disseminated Lyme Disease

(Post-treatment, chronic, persistent, or neurological) If Lyme disease isn’t promptly or effectively treated in the first two stages, Lyme can occur weeks, months or even years after the tick bite. The Lyme bacteria have spread throughout the body and many people develop chronic arthritis as well as an increase in neurological and cardiac symptoms. Symptoms may include:

Arthritis with severe joint pain and swelling, particularly the knees and other large joints

Severe headaches, neck stiffness or migraines

Vertigo, dizziness, shortness of breath

Sleep disturbances, insomnia

Heart palpitations or an irregular heart beat

Mental fogginess, concentration issues

Numbness, shooting pains or tingling in the arms, legs, hands or feet

Problems following conversations and processing information

Severe fatigue

Facial palsy (loss of muscle tone or droop on one or both sides of the face)

Intermittent pain in tendons, muscles, joints, and bones

Inflammation of the brain and spinal cord

Nerve pain

The cause of Lyme disease is known but the reason why some people transition to PTLDS / chronic / persistent Lyme disease is unknown.

Diagnosis

There is much speculation regarding the many hypotheses for this but no conclusive evidence for the transition to PTLDS exists yet. Furthermore, there is no diagnostic test currently available that can determine if Borrelia burgdorferi has been eliminated after treatment.  Current diagnosis of PTLDS  / chronic  / persistent Lyme disease is based on symptoms, physical findings, and the possibility of exposure to infected ticks.

To aid in the diagnosis, OMF is developing a patient-driven tool named “Personalized Automated Symptom Summary (PASS)” that is intended to aid a clinician to more efficiently define the character and priorities of symptoms for patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS), PTLDS / chronic / persistent Lyme disease, or Fibromyalgia.

The overall strategy is to reduce the time spent by a clinician to evaluate and diagnose a patient with a chronic illness. The intent is to bridge the communication gap between patient and doctor, helping patients to more accurately and efficiently convey their symptoms to their treating physician.

There are also no known treatments of the PTLDS / chronic  /  persistent Lyme disease, some patients get better over time, but that may take years, if ever at all.

Progress

Progress in ME / CFS research will help find answers to PTLDS/chronic/persistent Lyme disease research and vice versa. Many people infected with Borrelia burgdorferi develop ME/CFS-like symptoms. Therefore, understanding ME / CFS and PTLDS/chronic/persistent Lyme disease is crucial to improving the lives of millions. 

Support OMF

Support Open Medicine Foundation’s quest to find effective treatments and diagnostic tests for the millions of people affected by these devastating diseases!

References: Please visit our Strategic Partners to learn more about Lyme disease:

  1. Mayla Hsu, PhD, Director of Research and Science, Global Lyme Alliance, January 2021, Excerpts from “Does Chronic Inflammation Cause PTLD?
  2.  Marques, A. Chronic Lyme disease: a review. Infect Dis Clin North Am 22, 341-360, vii-viii, doi:10.1016/j.idc.2007.12.011 (2008).
  3. DeLong, A., Hsu, M. & Kotsoris, H. Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020. BMC Public Health 19, 352, doi:10.1186/s12889-019-6681-9 (2019).

 

Disclaimer: This website is for informational purposes only. The information provided on this website is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

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Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

 

Averting a second pandemic:

Open Medicine Foundation leads groundbreaking international study of

Long COVID’s conversion to ME/CFS

AGOURA HILLS, CALIF.  — Open Medicine Foundation (OMF) is leading a large-scale international collaborative study investigating the potential conversion of Post-Acute Sequelae SARS-CoV-2 infection — more commonly known as Long COVID or Post-COVID Syndrome —  to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a chronic, life-altering disease with no known cause, diagnostic test or FDA approved treatments available.

Up to 2.5 million people in the U.S. alone suffer from ME/CFS; the COVID-19 pandemic could at least double that number. An estimated 35 percent of Americans who had COVID-19 have failed to fully recover several months after infection, prompting many to call it “a potential second pandemic.”

OMF recognized a familiar health crisis emerging, one with eerie similarities to ME/CFS. This crisis presented a unique opportunity to understand how a viral infection — in this case COVID-19 — may develop into ME/CFS in some patients. The goal is to find targeted treatments for ME/CFS patients and ultimately prevent its onset in people infected with SARS-CoV-2 or other infections.

The federal government is only now investing in Post-COVID research, with no focus on its connection to ME/CFS. OMF has already engaged researchers for the largest-scale study of its kind, solely supported by private donors who have contributed over one million dollars to date. When fully funded, the five million dollar, three-year study will be conducted across the globe at OMF funded Collaborative Research Centers, led by some of the world’s top researchers and ME/CFS experts.

BACKGROUND

In a significant percentage of patients, infections preceded their development of ME/CFS.  For example, according to the CDC about one in ten infected with Epstein-Barr virus, Ross River virus, or Coxiella burnetti develop symptoms that meet the criteria for ME/CFS.

THE STUDY

The ability to follow the development of ME/CFS from a known viral infection is unprecedented to date and crucial to researchers’ understanding of the disease. The focus of this study is to find the biological differences between persons returning to good health after COVID-19 and persons who remained ill more than six months after infection and developed ME/CFS.  Understanding these alterations in key pathways can lead to groundbreaking discoveries including new biomarkers, drug targets, and prevention and treatment strategies.

###

About Open Medicine Foundation

Established in 2012, Open Medicine Foundation leads the largest, concerted worldwide nonprofit effort to diagnose, treat, and prevent ME/CFS and related chronic, complex diseases such as Post Treatment Lyme Disease Syndrome, Fibromyalgia, and Post COVID. OMF adds urgency to the search for answers by driving transformational philanthropy into global research. We have raised over $28 Million from private donors and facilitated and funded the establishment of five prestigious ME/CFS Collaborative Research Centers around the world. To learn more, visit www.omf.ngo.

CONTACT:

Heather Ah San

Development and Communications Manager

1-650-242-8669

heather@omf.ngo