2021 – Page 29 – American ME and CFS Society

Performance Validity and Outcome of Cognitive Behavior Therapy in Patients with Chronic Fatigue Syndrome

Abstract:

Objective: There is limited research examining the impact of the validity of cognitive test performance on treatment outcome. All known studies to date have operationalized performance validity dichotomously, leading to the loss of predictive information. Using the range of scores on a performance validity test (PVT), we hypothesized that lower performance at baseline was related to a worse treatment outcome following cognitive behavioral therapy (CBT) in patients with Chronic Fatigue Syndrome (CFS) and to lower adherence to treatment.

Method: Archival data of 1081 outpatients treated with CBT for CFS were used in this study. At baseline, all patients were assessed with a PVT, the Amsterdam Short-Term Memory test (ASTM). Questionnaires assessing fatigue, physical disabilities, psychological distress, and level of functional impairment were administered before and after CBT.

Results: Our main hypothesis was not confirmed: the total ASTM score was not significantly associated with outcomes at follow-up. However, patients with a missing follow-up assessment had a lower ASTM performance at baseline, reported higher levels of physical limitations, and completed fewer therapy sessions.

Conclusions: CFS patients who scored low on the ASTM during baseline assessment are more likely to complete fewer therapy sessions and not to complete follow-up assessment, indicative of limited adherence to treatment. However, if these patients were retained in the intervention, their response to CBT for CFS was comparable with subjects who score high on the ASTM. This finding calls for more research to better understand the impact of performance validity on engagement with treatment and outcomes.

Source: Roor JJ, Dandachi-FitzGerald B, Peters MJV, Knoop H, Ponds RWHM. Performance Validity and Outcome of Cognitive Behavior Therapy in Patients with Chronic Fatigue Syndrome. J Int Neuropsychol Soc. 2021 Jun 16:1-10. doi: 10.1017/S1355617721000643. Epub ahead of print. PMID: 34130768. https://pubmed.ncbi.nlm.nih.gov/34130768/

IN MEMORIAM: DR. PAUL CHENEY

I was deeply saddened to learn that Dr. Paul Cheney had passed away on June 10th. Along with Dr. Dan Peterson, Dr. Cheney practiced in Incline Village, Nevada during the outbreak of what appeared to be a new disease. It had the hallmarks of a viral infection, but their patients were not recovering. That disease would later be called “Chronic Fatigue Syndrome.”

Dr. Cheney’s passing has personal significance for me, because he was the doctor who diagnosed me in 1993. I had heard about him through the leader of our support group in Austin, Texas, who generously allowed me to listen to a tape she had made of her consult with him. I was impressed with Dr. Cheney’s wealth of knowledge, which stemmed not just from his clinical practice, but from his research background in immunology. He not only had an MD, but held a PhD in physics and had been a research associate in the Division of Immunology at the CDC. He had also served as Chief of Medicine at the USAF Hospital in Mt. Home, Idaho for three years before going into private practice.

On the wall of Dr. Cheney’s office was a map with pushpins indicating where his patients came from. There were pushpins in every state and all over the world. Over the course of his practice he saw thousands of patients, whom he tested extensively for immune and metabolic dysfunctions, cardiac function, co-infections (including Lyme disease), indicators of viral reactivation, antigen sensitivity, and autoimmune activity, among others. I don’t think anyone understood ME/CFS as well as he did. Dr. Cheney was our “resident genius.”

Dr. Cheney spent four hours with me during our initial consult. He was not just thorough, he was kind. When he pronounced me “severely ill” there was genuine concern in his eyes. He gave me a piece of advice that I never forgot. “You are in a leaky boat,” he said. “How much can you throw overboard?” Throwing things overboard has saved me on many occasions.

The last time I saw Dr. Cheney was at the IACFS/ME Conference in San Francisco in 2014. I gave him a big hug and introduced myself as a former patient. “I remember you,” he said. It had been 21 years.

RIP Dr. Cheney. The world is poorer without you in it.

More information

Dr Cheney on heart function – from Dr. Myhill’s site: “Dr Paul Cheney has been working with the CFS patients clinically and experimentally for decades and this page is based on many of his ideas. This pulls together many clinical issues which hitherto were inexplicable to me and provides the basis for new therapies for CFS.”

Phoenix Rising Dr. Cheney page – Contains many links to protocols, treatment plans, etc. Some links are dead, but most are still active.

The Cheney Chronicles #2: His Protocol For Chronic Fatigue Syndrome – Cort Johnson’s blog, Health Rising, has two articles detailing one patient’s consult with Dr. Cheney.

ProHealth has a number of articles about Dr. Cheney’s treatment approach.

A Colossus in the ME/CFS Field Passes: Remembering Paul Cheney MD, Ph.D. – Cort Johnson talks about the treatments Dr. Cheney used, as well as his theories about the pathophysiology of ME/CFS.

The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community‑Based Sample

Abstract:

Background: Most pediatric prevalence studies of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been based upon data from tertiary care centers, a process known for systematic biases such as excluding youth of lower socioeconomic status and those less likely to have access to health care. In addition, most pediatric ME/CFS epidemiologic studies have not included a thorough medical and psychiatric examination. The purpose of this study was to determine the prevalence of pediatric ME/CFS from an ethnically and sociodemographically diverse community-based random sample.

Method: A sample of 10,119 youth aged 5-17 from 5622 households in the Chicagoland area were screened. Following evaluations, a team of physicians made final diagnoses. Youth were given a diagnosis of ME/CFS if they met criteria for three selected case definitions. A probabilistic, multi-stage formula was used for final prevalence calculations.

Results: The prevalence of pediatric ME/CFS was 0.75%, with a higher percentage being African American and Latinx than Caucasian. Of the youth diagnosed with ME/CFS, less than 5% had been previously diagnosed with the illness.

Conclusions: Many youth with the illness have not been previously diagnosed with ME/CFS. These findings point to the need for better ways to identify and diagnose youth with this illness.

Source: Jason LA, Katz BZ, Sunnquist M, Torres C, Cotler J, Bhatia S. The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community‑Based Sample. Child Youth Care Forum. 2020 Aug;49(4):563-579. doi: 10.1007/s10566-019-09543-3. Epub 2020 Jan 23. PMID: 34113066; PMCID: PMC8186295. https://pubmed.ncbi.nlm.nih.gov/34113066/

Insights from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome

Abstract:

SARS-CoV-2 can cause chronic and acute disease. Post-Acute Sequelae of SARS-CoV-2 infection (PASC) include injury to the lungs, heart, kidneys and brain, that may produce a variety of symptoms. PASC also includes a post-COVID-19 syndrome (“long COVID”) with features that can follow other acute infectious diseases as well as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Here we summarize what is known about the pathogenesis of ME/CFS and of acute COVID-19, and speculate that the pathogenesis of post-COVID-19 syndrome in some people may be similar to that of ME/CFS. We propose molecular mechanisms that might explain the fatigue and related symptoms in both illnesses, and suggest a research agenda for both ME/CFS and post-COVID-19 syndrome.

Source: A.L. Komaroff and W.I. Lipkin, Insights from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome, Trends in Molecular Medicine (2021), https://doi.org/ 10.1016/j.molmed.2021.06.002 https://www.cell.com/trends/molecular-medicine/fulltext/S1471-4914(21)00134-9 (Full text)

Kynurenine Clinical Trial for ME / CFS

Open Medicine Foundation is excited to announce its support of an initiation of a clinical trial to understand potential disturbances in the tryptophan metabolism and to test the benefits of treating people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) with Kynurenine. Kynurenine is naturally produced in the body, is a key metabolite in the tryptophan metabolism, and serves several roles in the immune system and inflammation. The Kynurenine clinical trial will be conducted at the ME / CFS Collaborative Research Center at Uppsala University under the supervision of Dr. Jonas Bergquist. OMF has provided support to initiate the study in a randomized, double-blind, placebo-controlled, crossover study. The purpose of the study is to evaluate whether kynurenine is directly connected to ME / CFS patient symptom severity.

A proprietary herbal drug Young Yum Pill ameliorates chronic fatigue syndrome in mice

Abstract:

Background: Chronic fatigue syndrome (CFS) is a complex disease with few effective and safe therapies. Young Yum Pill (YYP), a proprietary herbal drug, has been used to relieve CFS-like symptoms. The pharmacological basis of this application of YYP is unknown.

Purpose: This study aimed to investigate the pharmacological effects and mechanisms of action of YYP in a mouse model of CFS.

Study design and methods: A food restriction and exhaustive swimming-induced mouse CFS model was used to evaluate the effects of YYP. Lymphocyte proliferation was assessed by MTT assays. T-lymphocyte subsets were analyzed by flow cytometry. Serum biochemical parameters were determined using commercial kits. Protein levels were measured by immunoblotting.

Results: Intragastric administration of YYP (2.85, 5.70, 11.40 g/kg) daily for 21 consecutive days significantly prolonged swimming time and diminished body weight loss of CFS mice. Mechanistic investigations revealed that YYP increased thymus and spleen indices of CFS mice, enhanced proliferation of lipopolysaccharide- or concanavalin A-stimulated spleen lymphocytes, and increased CD3⁺CD4⁺ and CD3⁺CD8⁺ T-cells in the spleen. YYP increased glycogen content in gastrocnemius muscle and liver, and lowered levels of triglyceride, lactic acid and urea nitrogen in sera of CFS mice. YYP suppressed the elevation of serum level of malondialdehyde, the increase of activities of lactic dehydrogenase and creatine phosphokinase, and the decrease of activity of the serum antioxidant enzyme superoxide dismutase in CFS mice. Moreover, YYP upregulated protein level of activated AMPK in gastrocnemius muscle and liver of CFS mice.

Conclusions: YYP ameliorates CFS by reversing metabolic changes, reducing oxidative damage, and improving some immune function parameters in mice. This study provides pharmacological justifications for the use of YYP in treating fatigue, including CFS.

Source: Yin C, Fu X, Chou J, Li J, Chen Y, Bai J, Wu J, Wu Y, Wang X, Yu ZL. A proprietary herbal drug Young Yum Pill ameliorates chronic fatigue syndrome in mice. Phytomedicine. 2021 May 25;88:153602. doi: 10.1016/j.phymed.2021.153602. Epub ahead of print. PMID: 34102522. https://pubmed.ncbi.nlm.nih.gov/34102522/

Postdengue chronic fatigue syndrome in an adolescent boy

Abstract:

Chronic fatigue syndrome (CFS) is often preceded by a viral illness and has recurrent ‘flulike’ symptoms which include a wide spectrum of musculoskeletal and neurological clinical features. The condition is also known as myalgic encephalomyelitis and systemic exertional intolerance syndrome. CFS has been reported following dengue among adult patients. We report the case of an 11-year-old boy who developed CFS following recovery of dengue haemorrhagic fever (DHF). The reported child was initially managed as for DHF and was clinically asymptomatic on post-discharge day 3. He was re-admitted after 3 weeks with severe joint pains, myalgia and unbearable headache. As his symptoms persisted, he was investigated in-depth. All investigations were normal except mild elevation of liver functions. The diagnosis of CFS secondary to DHF was made by exclusion of differential diagnosis. At 1-year follow-up, patient continues to have symptoms after treatment with physiotherapy and nutrition counselling.

Source: Thadchanamoorthy V, Dayasiri K. Postdengue chronic fatigue syndrome in an adolescent boy. BMJ Case Rep. 2021 Jun 7;14(6):e238605. doi: 10.1136/bcr-2020-238605. PMID: 34099442. https://pubmed.ncbi.nlm.nih.gov/34099442/

Report on the impact of Covid-19 on ME

Summary:

This summary report provides the preliminary findings from responses to the survey we are carrying out, in partnership with Action for ME, to identify the impact that Covid-19 has on people with ME. The report is based on the analysis of the 220 responses received in the three weeks after the survey went live in late March.

These initial responses show clearly that Covid-19 had a significant impact on respondents, with more than three quarters (76%) of respondents saying that Covid-19 made their ME symptoms worse. This impact appears to be long lasting, with over two thirds of respondents reporting that the worsening in symptoms has lasted more than 6 months and have still not resolved.

The wider impact of Covid-19 is illustrated by the negative impacts on the health of respondents, including 72% reporting new symptoms. The analysis also shows that respondents’ ability to attend education or work had decreased and their use of health services had increased significantly, highlighting the potential economic impact of Covid-19.

Read the full report HERE.

Utility of positron emission tomography imaging in the diagnosis of chronic Q fever: A Systematic Review

Abstract:

Chronic Q fever is a diagnostic challenge. Diagnosis relies on serology and/or the detection of DNA from blood or tissue samples. PET-CT identifies tissues with increased glucose metabolism, thus identifying foci of inflammation. Our aim was to review the existing literature on the use of PET-CT to help diagnose chronic Q fever. A literature search was conducted in PubMed and Google Scholar to ascertain publications that included the terms ‘Positron Emission Tomography’ and ‘PET CT’ in combination with subheadings ‘chronic Q fever’ and ‘Coxiella burnetii’ within the search. To broaden our search retrieval, we used the terms ‘chronic Q fever’ and ‘PET-CT’.

Published literature up to 16^th April 2020 was included. 274 articles were initially identified. Post-exclusion criteria, 46 articles were included. Amongst case reports and series, the most frequent focus of infection was vascular, followed by musculoskeletal then cardiac. 79.5% of patients had a focus detected with 55.3% of these having proven infected prosthetic devices. Amongst the retrospective and prospective studies, a total of 394 positive sites of foci were identified with 186 negative cases. Some had follow-up scans (53), with 75.5% showing improvement or resolution. Average timeframe for documented radiological resolution post-initiating treatment was 8.86 months.

PET-CT is a useful tool in the management of chronic Q fever. Knowledge of a precise focus enables for directed surgical management helping reduce microbial burden, preventing future complications. Radiological resolution of infection can give clinicians reassurance on whether antimicrobial therapy can be ceased earlier, potentially limiting side effects.

Source: Sivabalan P, Visvalingam R, Grey V, Blazak J, Henderson A, Norton R. Utility of positron emission tomography imaging in the diagnosis of chronic Q fever: A Systematic Review. J Med Imaging Radiat Oncol. 2021 May 30. doi: 10.1111/1754-9485.13244. Epub ahead of print. PMID: 34056851. https://pubmed.ncbi.nlm.nih.gov/34056851/