Thursday, March 28, 2024

Chronic Fatigue Syndrome And Pots

Must Read

What You Need To Know

Still Trying to Cure My Chronic Fatigue Syndrome (ME/CFS) & Postural Orthostatic Tachycardia (POTS)
  • POTS is a common condition affecting an estimated one to three million Americans.
  • The symptoms of POTS include but are not limited to lightheadedness , difficulty thinking and concentrating , fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea.
  • Researchers dont fully understand the causes of POTS, but it is more common in women than men and is more likely to develop in adolescents and young adults.
  • POTS is diagnosed using either a 10-minute standing test or a head-up tilt table test occasionally other tests are performed to identify specific characteristics of POTS present in some patients.
  • Most peoples POTS symptoms respond to a combination of diet, medications, physical therapy and other treatments.

Onset Epidemiology And Natural History

Onset of symptoms of orthostatic intolerance often follows an infectious disease a relation to abnormalities in the inflammatory response have been proposed.1 Patients often slowly improve after the initial infectious illness, only to become ill again spontaneously or during an intercurrent infection.1 Approximately 75% to 80% of patients are women ranging in age from 14 to 50 years22 and therefore roughly span the ages from menarche to menopause. POTS is relatively uncommon in preadolescent children and may have a distinct pathophysiology in the very young. The reasons for sex preference are unclear, although women are known to be more vulnerable to orthostatic intolerance.23 Relations with the menstrual cycle or with altered estrogens or progestins are yet to be established.24 The illness may follow a remitting and relapsing clinical course, often enduring for years, but seems in many instances self-limited. Pregnancy may resolve abnormalities . Similar findings and clinical course have been described under a number of names, including the hyperadrenergic syndrome of Streeten25,26 and idiopathic hypovolemia of Fouad.27 As currently construed, POTS was first reported in adults.1,2831 Subsequently, pediatric cases of POTS were reported and showed that POTS is a common form of orthostatic intolerance during upright tilt in adolescents with chronic fatigue syndrome .32,33 There is evidence for POTS in adult CFS in 25% to 50% of cases.34

How Is Chronic Fatigue Syndrome Diagnosed

CFS diagnosis depends on two criteria:

  • Severity and duration. The severe and chronic tiredness lasts for more than 6 months and other medical conditions have been ruled out.
  • Number of symptoms. Four or more symptoms of CFS are present.
  • A specific treatment for CFS has yet to be proven effective. Vitamin supplements and medicines have some benefit. Many treatments just relieve the symptoms of CFS.

    You May Like: Best Step Anti Fatigue Foam Floor Mat

    Neurotransmitters In Cfs And Pots

    Additionally, there is research examining the role neurotransmitters play in cognitive impairments in patients with CFS and POTS. Previous researchers have found impaired functioning of the norepinephrine transporter contributes to orthostatic intolerance , a symptom of both CFS and POTS . In contradiction, Goldstein et al. did not find any evidence of NET dysfunction. OI occurs when patients with CFS stand up quickly and become dizzy and lightheaded. If OI occurs when the norepinephrine transporter is inhibited, then impairments with the norepinephrine transporter could help explain the cognitive impairments and mental cloudiness associated among patients with CFS and POTS.

    Other studies report CFS and POTS symptoms are directly related to abnormalities of central neurotransmitters including corticotrophin-releasing hormone . The main function of CRH is to produce behavioral and locomotors function. Deficiency of CRH could explain chronic fatigue, and in turn, cognitive impairments associated with chronic fatigue.

    It is clear that understanding cognitive impairments and symptoms in CFS and POTS is not a simple task. However, the common theme suggests some sort of impairment within the central nervous system. Further research should focus on the central nervous system as a possible gateway of understanding the etiology of these disorders further.

    Actometer And Diary Score

    POTS: Causes, Symptoms &  Support Strategies

    Activity was measured using an actometer, a motion-sensing device that measures physical activity, which is worn at the ankle during 12 consecutive days and nights as part of the standard diagnostic work-up at our centre. The small, light device contains a sensor that is sensitive in three directions , . When an acceleration passes the predefined threshold, the motion is registered as activity. The acquired information can be used to calculate a mean activity score during the time awake this score is expressed as the average number of accelerations per 5-min period. The mean activity score over 12 days for patients with CFS has been reported to be 66 ± 22 . When patients scored above 66 on not more than 1 day of the 12 days, they are labelled as low active a score of > 66 on 2â9 days and on 10â12 days is considered relatively active and highly active, respectively.

    You May Like: Can Lupus Cause Extreme Fatigue

    Comparison Of Cfs And Non

    With respect to age, there were no differences between adult CFS and non-CFS patients , as shown in Table . Similarly there were no significant differences between adolescent CFS and non-CFS patients . Although non-CFS patients were severely fatigued with a mean CIS-f of 48, they were less fatigued than patients with CFS . This was also true for adolescent non-CFS and CFS patients . Furthermore, patients with CFS were more impaired than non-CFS patients . Mean blood pressure and heart rate in the supine and upright positions did not differ between groups.

    Characteristic

    P

    Gracely Box Scale Measurements

    The Descriptor Differential Scale was adapted as the Gracely Box Scale in order to grade symptom intensity or severity . The 0 to 20 anchored, ordinal scale was originally intended to assess pain intensity . The wide range and anchors gave subjects options to grade low and high severity complaints that may have avoided floor and ceiling effects, respectively. Subjects were instructed on using the scale and choosing the optimal integer. No fractions were allowed. In this report, we focus solely on Dizziness and Lightheadedness symptoms.

    Table 1 Gracely Box Scale

    Read Also: Do Heart Problems Cause Fatigue

    Me/cfs And Long Covid Frighteningly Similar If Not Identical

    Data for a different system derangement in long COVID and ME/CFS, the pathophysiology of exercise intolerance, were presented in another keynote talk by David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women’s Hospital and director of the Massachusetts General Hospital Cardiopulmonary Laboratory, Boston. He has conducted invasive cardiopulmonary exercise testing in patients with ME/CFS and patients with long COVID.

    Previously, Systrom and his team found that patients with ME/CFS have distinct defects in both ventricular filling pressure and oxygen extraction from the muscles. Neither of those are features of deconditioning, which is often blamed for exercise intolerance in people with ME/CFS. Rather, the major defect in deconditioning is decreased stroke volume and cardiac output. In ME/CFS patients, he found supranormal pulmonary blood flow compared with VO2 max, suggesting peripheral left-to-right shunting.

    In addition, Systrom and colleagues found that a large proportion of ME/CFS patients with these peripheral vascular defects also have biopsy-demonstrated small-fiber neuropathy, suggesting that acute exercise intolerance is related to underlying autonomic nervous system dysfunction.

    Systrom’s conclusion: “Dyspnea and hyperventilation are common in ME/CFS and long COVID and there is significant overlap with POTS.”

    For more news, follow Medscape on , , , , and

    Can Postural Orthostatic Tachycardia Syndrome Be Fatal

    Dysautonomia & POTS in ME/CFS [Diagnosis, Management, Treatment]

    While POTS can be life-changing, it is not life-threatening. One of the biggest risks for people with POTS is falls due to fainting. Not everyone who has POTS faints. And, for those who do, it may be a rare event. But, if you dont know that you have POTS, you may not take precautions against trauma from falls.

    Don’t Miss: Fatigue After Stroke Recovery Time

    Types And Causes Of Pots

    The causes of POTS vary from person to person. Researchers dont entirely understand the origins of this disorder. The classification of POTS is the subject of discussion, but most authorities recognize different characteristics in POTS, which occur in some patients more than others. Importantly, these characteristics are not mutually exclusive person with POTS may experience more than of these at the same time:

    Neuropathic POTS is a term used to describe POTS associated with damage to the small fiber nerves . These nerves regulate the constriction of the blood vessels in the limbs and abdomen.

    Hyperadrenergic POTS is a term used to describe POTS associated with elevated levels of the stress hormone norepinephrine.

    Hypovolemic POTS is a term used to describe POTS associated with abnormally low levels of blood .

    Secondary POTS means that POTS is associated with another condition known to potentially cause autonomic neuropathy, such as diabetes, Lyme disease, or autoimmune disorders such as lupus or Sjögrens syndrome.

    Long Distance Vascular Control

    Another recent autonomic condition producing a complex form of POTS is the norepinephrine transporter protein deficiency. This has been reported in only a single family. Investigators have identified a specific genetic defect in norepinephrine transporter protein deficiency64 exerting both central and peripheral effects on vascular regulation.65 Despite its rarity, the illness has furnished an ideal monogenetic model for autonomic illness, and appropriate animal knock-out models have been constructed and investigated.66

    Also Check: How To Help Anemia Fatigue

    Treatments For The Impaired Renin

    Treatments help some and not others, and can come with side effects. Remarkably few studies have been done given how often some of the drugs are used in POTS. Possible treatments include:

    • Fludrocortisone an aldosterone enhancer that increases sodium and water retention Find out more here.
    • Desmopression a synthetic analog of arginine vasopressin that increases intravascular volume.
    • Erythropoietin a hormone that increases blood volume.
    • Oral rehydration solution increases blood volume find out how here.

    At this point, much remains unclear.

    Its clear the renin-angiotensin-aldosterone system that regulates blood volume is messed up in ME/CFS and POTS, and is likely causing the low blood volume there.

    Low, instead of high, plasma renin and aldosterone levels in the face of the low blood volume found has led researchers to term this situation the renin-aldosterone paradox in POTS and ME/CFS.

    Two studies suggest that the activity of the ACE-2 enzyme is reduced Its not clear why ACE-2 activity is reduced, but genetic issues or low blood volume could account for it.

    The low aldosterone levels remain the biggest mystery and the biggest problem since aldosterone is the main blood volume enhancer in the body. Given the low blood volume and high Ang II levels found in ME/CFS/POTS, aldosterone levels should be sky-high but are low. Miwa believes that a blunted HPA axis could account for the low aldosterone levels, but the cause is still unclear.

    New Forms Of Orthostatic Intolerance Popping Up

    Signs and symptoms

    Peter Novak, MD, PhD, has been making the invisible visible.

    Peter Novak, a board-certified neurologist, and autonomic nervous system specialist at Brigham and Womens Hospital in Harvard, is right in the middle of the ME/CFS/POTS/Lyme/Long-COVID soup. Hes become something of a specialist in making the invisible visible and uncovering new forms of orthostatic intolerance.

    After linking hypocapnia to reduced blood flows to the brain in his own strange group of patients, he called the new condition hypocapnic cerebral hypoperfusion. Like his colleague David Systrom, Novak was being handed patients who just didnt fit the mold. In Novaks case, he was getting patients who had all the symptoms of POTS but who didnt experience heart racing upon standing.

    Recommended Reading: Chronic Pain And Fatigue Body Soak

    Personal And Medical History

    The health care provider will take a careful personal and family medical history, and perform a thorough physical examination and psychological assessment. The provider will ask questions such as:

    • When did the fatigue first begin?
    • Does anything make it worse or better?
    • Is it better at certain times of the day?
    • Does physical or mental activity make it worse?
    • What are your other symptoms?
    • Has anyone else in your family experienced similar symptoms?
    • Is your personal and professional life stressful?

    The provider may also ask about any changes in weight or recent illnesses. You should tell your provider about any drugs you are taking, including over-the-counter medications, and vitamin, herbal, or dietary supplements. You may be asked to keep a diary for several weeks to record your activities and symptoms.

    Pots As Thoracic Hypovolemia

    POTS is heterogeneous. It represents a category of disease rather than a single distinct illness. Common to all variants is a final physiologic pathway involving excessively reduced venous return to the heart while upright. Collected evidence indicates excessive thoracic hypovolemia in all patients with POTS. The signature tachycardia may therefore result from related reflex parasympathetic withdrawal with some contribution from sympathetic activation including sympathetic cardiac effects. Thus, for example, studies of heart rate and blood pressure variability indicate vagal withdrawal and at least relative cardiac sympathetic excess.3537 Decreases in baroreflex gain measured by the Oxford method38 or by variability techniques39 can be replicated by a model of hypovolemia in human beings.40

    Read Also: What Causes Dizziness Fatigue And Blurred Vision

    Who Treats Postural Orthostatic Tachycardia Syndrome

    In many cases, your primary care physician is qualified to treat POTS. For complex POTS cases, it is often helpful to have input from a neurologist or cardiologist experienced in this condition. Rehabilitation physicians can help as well in developing an exercise plan that works for you.

    Myositis and Neuromuscular Diseases | Q& A with Dr. Tae Chung

    Neuromuscular rehabilitation specialist Tae Chung discusses neuromuscular diseases and how they are treated, including with rehabilitation. He also talks about treatment options for myositis and POTS, as well as the current research in the field.

    Assessment Of Haemodynamic Responses To Standing

    Chronic Fatigue Syndrome and Persistent Fatigue

    Subjects underwent formal autonomic assessment in the cardiovascular laboratory. All subjects refrained from smoking and caffeine ingestion on the day of investigation and ate a light breakfast only. All investigations were performed at the same time of day, and took place in a warm, quiet room. All cardiovascular assessments were carried out with continuous heart rate and beat-to-beat blood pressure measurement . Heart rate and blood pressure responses to standing over 2 min were measured. Data were digitized and stored for offline analysis by an investigator blinded to the fatigue status and whether data was from patients or controls. Baseline measurements were taken as an average for 20 beats in supine position immediately prior to standing. Orthostatic heart rate change was the change in mean heart rate from baseline on standing. The absolute maximum heart rate on standing was also recorded.

    POTS was diagnosed using recognized diagnostic criteria and was defined as symptoms of orthostatic intolerance associated with an increase in heart rate from the supine to upright position of > 30 beats per minute or to a heart rate of > 120 beats per minute on immediate standing or during the 2 min of standing.

    You May Like: Fatigue Even When Getting Enough Sleep

    Immune System Dysfunction Appears To Underlie Many Cases

    In a keynote address during the conference, Akiko Iwasaki, PhD, of Yale University, New Haven, Connecticut, pointed out that long COVID and ME/CFS are among many unexplained post-acute infection syndromes associated with a long list of viral pathogens, including Ebola, the prior SARS viruses, Epstein-Barr virus, and Dengue, as well as non-viral pathogens such as Coxiella burnetii and Borrelia .

    Iwasaki cited a recent Nature Medicine review article that she co-authored on this topic with an ME/CFS patient, noting: “We really need to understand why some people are failing to recover from these types of diseases.”

    Emerging evidence supports four different hypotheses regarding pathogenesis:

    • viral reservoir/viral pathogen-associated molecular pattern molecules

    • dysbiosis/viral reactivation

    “Right now, it’s too early to exclude or make any conclusions about these. We need to have an open mind to dissect these various possibilities,” she said.

    Two speakers reported findings of immune dysregulation in both ME/CFS and long COVID. Wakiro Sato, MD, PhD, of the National Center of Neurology and Psychiatry, Tokyo, Japan, reported that anti-G-protein coupled receptor antibodies were found in 33 of 60 patients with long COVID, and more than 40% had peripheral immune cell profile abnormalities. These findings were similar to those found in patients with ME/CFS, published by Sato’s team and other researchers in Germany.

    Thinking Outside The Box

    This is the second of three posts on IVIG treatment and autoimmunity in chronic fatigue syndrome , POTS and fibromyalgia.

    Findings in autoimmune dysautonomia are opening up new possibilities for POTS, ME/CFS and possibly fibromyalgia.

    Its time to start thinking outside the traditional ME/CFS/POTS/FM boxes. Its possible that if youve been diagnosed with these diseases that you may actually have an autoimmune dysautonomia an autoimmune disease which has attacked your autonomic nervous system. It seems more and more likely that, given the proper testing, a significant subset of ME/CFS/FM/POTS patients will fit into that category.

    Dr. Schofield at the University of Colorado and Immunoehealth, Denver, and Dr. Chemali of the Eastern Virginia Medical School, in Virginia, are two of the doctors leading the charge. In a Dysautonomia International video, Dr. Schofield called herself an autoimmunologist one of the few around. A lot of what she does, she noted, doesnt fit into the current silos in medicine, but then neither do her patients.

    A recent study of IVIGs effectiveness demonstrated what kinds of patients these doctors are treating and how effective the treatments can be.

    You May Like: High Blood Pressure Joint Pain Fatigue

    Pots Prevalence In Cfs Seid And Non

    The prevalence of POTS was 8.4% within the total CFS population, and 5.7% for adults and 18.2% for adolescents . The POTS prevalence was not different between patients with and without a clinically significant level of depressive symptoms . In patients with CFS fulfilling the SEID criteria, POTS was present in 5.2% of adults and 22.0% of adolescents , which was not significantly different from the POTS prevalence in the overall CFS population . In the non-CFS fatigued population, POTS was present in 6.9% of adults and 17.4% of adolescents, which was not statistically different from patients with CFS .

    More articles

    Popular Articles