The ME Association ME/CFS (& Long Covid) Weekly Research Round-up

June 11, 2021


The weekly research round-up now includes recent publications about ME/CFS and about Long Covid. We highlight several studies that have particularly caught our interest and follow these with the full list of publications together with their abstracts (summaries).

All research relating to ME/CFS can be located in the ME Association: Index of ME/CFS Published Research. It is a free resource and available to anyone.

This extensive library of research is normally updated at the end of each month, but with the change in staff, it will be updated again by 01 June 2021.

The Index provides an A-Z of published research studies, selected key documents and articles, listed by subject matter, on myalgic encephalomyelitis, myalgic encephalopathy, and/or chronic fatigue syndrome (ME/CFS).

You can use it to easily locate and read any research that you might be interested in regard to, e.g., epidemiology, infection, neurology, post-exertional malaise etc.

You can also find the Research Index in the Research section of the website together with a list of Research Summaries that provide more detailed lay explanations of the more interesting work that has been published to date.

ME/CFS Research Published 29 May – 04 June 2021 

Five new research studies on ME/CFS have been published during this period and we have also included nine studies on Long Covid. We highlight three on ME/CFS from the selection below: 

First, research from Germany (1) that tested immunoglobulin as a treatment (Ig) (immunoglobulins are commonly known as antibodies) on people with ME/CFS. Ig is often used to treat immune deficiencies where the body does not make enough antibodies of its own or they do not work properly. 

The study looked at administering Ig subcutaneously (SC) (in or under the skin) and found that fatigue and physical functioning improved in patients that received the treatment. It concluded that,

“IgG treatment is feasible and led to clinical improvement in a subset of ME/CFS patients.” 

Second, (2) is a paper from Dr Nina Muirhead which we featured in a recent blog on the ME Association website. The researchers contacted the 34 medical schools in the UK and found training on ME/CFS to be inadequate.

“The General Medical Council (GMC) and Medical Schools Council (MSC) are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose, and treat ME/CFS. The GMC is urged to consider creating a registered specialty encompassing ME/CFS, post-viral fatigue and long Covid.”

Third, (4) is a paper from patient advocates who wanted to understand if ME/CFS specialist services recorded harms associated with the current treatment recommendations CBT and GET. Using FOI requests, they determined that clinics do not even consider the potential for harm despite acknowledging that some people under their care dropout from treatment.

“We recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.”

ME/CFS Research References and Abstracts 

1. Tolerability and Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study. 

Scheibenbogen C, Sotzny F, Hartwig J, Bauer S, Freitag H, Wittke K, Doehner W, Scherbakov N, Loebel M, Grabowski P. 
Journal of Clinical Medicine. 2021 May 29;10(11):2420. 

Abstract 

Background:Chronic fatigue syndrome (ME/CFS) is a complex disease frequently triggered by infections. IgG substitution may have therapeutic effect both by ameliorating susceptibility to infections and due to immunomodulatory effects. 

Methods:We conducted a proof-of-concept open trial with s.c. IgG in 17 ME/CFS patients suffering from recurrent infections and mild IgG or IgG subclass deficiency to assess tolerability and efficacy. Patients received s.c. IgG therapy of 0.8 g/kg/month for 12 months with an initial 2-month dose escalation phase of 0.2 g and 0.4 g/kg/month. 

Results:Primary outcome was improvement of fatigue assessed by Chalder Fatigue Scale (CFQ; decrease ≥ 6 points) and of physical functioning assessed by SF-36 (increase ≥ 25 points) at month 12. Of 12 patients receiving treatment per protocol 5 had a clinical response at month 12.

Two additional patients had an improvement according to this definition at months 6 and 9. In four patients treatment was ceased due to adverse events and in one patient due to disease worsening. We identified LDH and soluble IL-2 receptor as potential biomarker for response. 

Conclusion:Our data indicate that self-administered s.c. IgG treatment is feasible and led to clinical improvement in a subset of ME/CFS patients. 

2. Medical School Education on Myalgic Encephalomyelitis 

Muirhead N, Muirhead J, Lavery G, Marsh B 
Medicina (Kaunas). 2021 May 28;57(6):542

Abstract 

Background and objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed.

For two decades, the medical education establishment in the UK has been challenged to remedy these failings, but little has changed. Meanwhile, there has been an exponential increase in biomedical research and an international paradigm shift in the literature, which defines ME/CFS as a multisystem disease, replacing the psychogenic narrative.

This study was designed to explore the current UK medical school education on ME/CFS and to identify challenges and opportunities relating to future ME/CFS medical education.  

Materials and methods:A questionnaire, developed under the guidance of the Medical Schools Council, was sent to all 34 UK medical schools to collect data for the academic year 2018-2019. 

Results: Responses were provided by 22 out of a total of 34 medical schools (65%); of these 13/22 (59%) taught ME/CFS, and teaching was led by lecturers from ten medical specialties. Teaching delivery was usually by lecture; discussion, case studies and e-learning were also used.

Questions on ME/CFS were included by seven schools in their examinations and three schools reported likely clinical exposure to ME/CFS patients. Two-thirds of respondents were interested in receiving further teaching aids in ME/CFS. None of the schools shared details of their teaching syllabus, so it was not possible to ascertain what the students were being taught.  

Conclusions: This exploratory study reveals inadequacies in medical school teaching on ME/CFS. Many medical schools (64% of respondents) acknowledge the need to update ME/CFS education by expressing an appetite for further educational materials.

The General Medical Council (GMC) and Medical Schools Council (MSC) are called upon to use their considerable influence to bring about the appropriate changes to medical school curricula so future doctors can recognise, diagnose, and treat ME/CFS. The GMC is urged to consider creating a registered specialty encompassing ME/CFS, post-viral fatigue and long Covid.  

3. Effectiveness a herbal medicine (Sipjeondaebo-tang) on adults with chronic fatigue syndrome: A randomized, double-blind, placebo-controlled trial 

Shin S, Park SJ, Hwang M
Integrative Medicine Research. 2021 Jun;10(2):100664 

Abstract 

Background:Sipjeondaebo-tang (SJDBT, Shi-quan-da-bu-tang in Chinese) is a widely prescribed herbal medicine in traditional Korean medicine. This study aimed to evaluate the effectiveness and safety of SJDBT for treating chronic fatigue syndrome (CFS). 

Methods:Ninety-six eligible participants were randomly allocated to either the SJDBT or placebo groups in a 1:1 ratio. Nine grams of SJDBT or placebo granules were administered to the patients for 8 weeks. The primary outcome was the response rate, defined as the proportion of participants with a score of 76 or higher in the Checklist Individual Strength assessment. Other measurements for fatigue severity, quality of life, and qi/blood/yin/yang deficiency were included. Safety was assessed throughout the trial. 

Results:At week 8, the response rate did not significantly differ between the groups (SJDBT: 35.4%; placebo: 54.2%; P = 0.101, effect size [95% confidence interval] = 0.021 [-0.177, 0.218]). However, the scores of the visual analogue scale (P = 0.001, -0.327 [-0.506, -0.128]), Fatigue Severity Scale (P = 0.020, 0.480 [0.066, 0.889]), and Chalder fatigue scale (P = 0.004, -0.292 [-0.479, -0.101]) for the SJDBT group showed significant improvements in fatigue severity at the endpoint. Quality of life was not significantly different. Furthermore, SJDBT significantly ameliorated the severity of qi deficiency compared to that in the placebo group. No serious adverse events were observed. 

Conclusion:This trial failed to show a significant improvement in fatigue severity, as assessed by the CIS-deprived response rate. It merely showed that SJDBT could alleviate the severity of fatigue and qi deficiency in patients with CFS. However, the further study is needed to confirm the details. 

4. Monitoring treatment harm in myalgic encephalomyelitis/chronic fatigue syndrome: A freedom-of-information study of National Health Service specialist centres in England 

McPhee G, Baldwin A, Kindlon T, Hughes BM.
Journal of Health Psychology 26 (7): 975-984 

Abstract 

The use of graded exercise therapy and cognitive behavioural therapy for myalgic encephalomyelitis/chronic fatigue syndrome has attracted considerable controversy.

This controversy relates not only to the disputed evidence for treatment efficacy but also to widespread reports from patients that graded exercise therapy, in particular, has caused them harm.

We surveyed the National Health Service affiliated myalgic encephalomyelitis / chronic fatigue syndrome specialist clinics in England to assess how harms following treatment are detected and to examine how patients are warned about the potential for harms.

We sent 57 clinics standardised information requests under the United Kingdom’s Freedom of Information Act. Data were received from 38 clinics.

Clinics were highly inconsistent in their approaches to the issue of treatment-related harm. They placed little or no focus on the potential for treatment-related harm in their written information for patients and for staff.

Furthermore, no clinic reported any cases of treatment-related harm, despite acknowledging that many patients dropped out of treatment.

In light of these findings, we recommend that clinics develop standardised protocols for anticipating, recording, and remedying harms, and that these protocols allow for therapies to be discontinued immediately whenever harm is identified.  

5. Postdengue chronic fatigue syndrome in an adolescent boy 

Thadchanamoorthy V and Dayasiri K.
BMJ Case Reports. 2021 Jun 7;14(6):e238605 

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. 

Long-COVID Research References  

  1. Post-COVID-19 syndrome: epidemiology, diagnostic criteria and pathogenic mechanisms involved 
  2. Long COVID in children: Partnerships between families and paediatricians are a priority for better care 
  3. Insights into SARS-CoV-2 Persistence and Its Relevance 
  4. Safety and efficacy of Ayurvedic interventions and Yoga on long term effects of COVID-19: A structured summary of a study protocol for a randomized controlled trial 
  5. The Long and the Short of It: Is “Long COVID” More Than Slow Resolution of the Acute Disease? 
  6. Swiss Recommendations for the Follow-Up and Treatment of Pulmonary Long COVID 
  7. Pediatric long-COVID: An overlooked phenomenon? 
  8. Extensive Loss of Health at Six Months in Survivors of COVID-19 
  9. Post-COVID-19 Long Haulers’ Disease May Mimic ME/CFS 

Katrina Pears, Research Correspondent, ME Association

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