LongCovid [+ CFS/ME]

In het Verenigd Koninkrijk was CGT met GET voorheen de standaard, maar in de richtlijn uit 2021 is GET verdwenen en wordt CGT voor ME/CVS afgewezen. In die richtlijn staat dat inspanningstherapieën schadelijk zijn voor ME/CVS patiënten en wordt CGT alleen nog genoemd in de onschadelijke variant: gericht op acceptatie en het leren leven met de ziekte.

Defined as the significant worsening of symptoms or the development of new ones following even minor physical, mental, or emotional exertion, a PEM “crash” can take days, weeks, or months to recover from, and some people claim they never do.

“People come in and tell me, I used to work out. I used to run. I used to love my job as the vice president of my company. And now I can’t do any of that,” says Mark VanNess, a researcher with the Workwell Foundation, which studies PEM in long COVID and other related chronic illnesses. “These are not people that want to stay home and collect disability. They’re forced to.”

In one study, about 75 percent of the almost 500 long COVID patients surveyed said physical activity made their symptoms worse, while less than one percent saw improvement

both the U.S. and U.K. governments removed graded exercise from ME/CFS official treatment guidelines

“Repeated crashes of PEM are like an injury,” Yellman says. “If you stub your toe really hard on the door, you need to let it heal before you put your shoe back on. If you stub it every day, there’s going to be scarring and the toenail isn’t going to grow back.”

The answer, according to physicians familiar with PEM, is pacing—managing daily activities through periods of exertion and rest. It’s critical, Yellman says, to break what he calls “the push-crash cycle,” by learning to recognize energy limits and resting accordingly, which for some people can take months or even years.

This lack of scientific understanding creates an untold degree of hardship for those dealing with severe and chronic sequelae of infections. Worse, when doctors cannot find a biological explanation for reported symptoms, patients are often left with little recourse and the feeling that their doctor believes the cause of their suffering is rooted in mental illness.

Multinational surveys have been conducted, with thousands upon thousands of adult participants reporting that recovery from an initial COVID infection took more than 35 weeks. Some of these studies highlight the fact that new ailments are reported 6-12 months after an initial COVID infection, which most commonly include fatigue, post-exertional malaise, and cognitive dysfunction.

the threat of long COVID could lead to a future public health catastrophe, much as the "long" effects of the Spanish Flu did a hundred years ago. Unfortunately, the pharmaceutical and medical community are not approaching long COVID with the same fervor that they had for COVID-19. As a result, there is a real danger that a broad-scale investigation into the origin of long COVID is postponed or neglected by funding agencies and the medical establishment.

Outdated Standard of CareIn the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),” leading to considerable deconditioning.53Burgess M. Chalder T. PACE manual for therapists. Cognitive behaviour therapy for CFS/ME. MREC version 2.1. PACE Trial Management Group. December 8, 2004.https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/3.cbt-therapist-manual.pdfDate accessed: May 20, 2021Google Scholar,108Geraghty K. Jason L. Sunnquist M. Tuller D. Blease C. Adeniji C. The ‘cognitive behavioural model’ of chronic fatigue syndrome: critique of a flawed model.Health Psychol Open. 2019; 6 (205510291983890)Crossref Scopus (20) Google Scholar However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment.4Geraghty K. Hann M. Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: analysis of a primary survey compared with secondary surveys.J Health Psychol. 2019; 24: 1318-1333Crossref PubMed Scopus (25) Google Scholar,108Geraghty K. Jason L. Sunnquist M. Tuller D. Blease C. Adeniji C. The ‘cognitive behavioural model’ of chronic fatigue syndrome: critique of a flawed model.Health Psychol Open. 2019; 6 (205510291983890)Crossref Scopus (20) Google Scholar,  109Jason L.A. Brown M. Brown A. et al.Energy conservation/envelope theory interventions.Fatigue. 2013; 1: 27-42PubMed Google Scholar,  110

Finally, contradicting safety claims, 54% to 74% of patients have reported experiencing harms after GET.4

Because of these concerns, the US Centers for Disease Control and Prevention and health agencies in some countries have since removed recommendations for CBT and GET.115US Centers for Disease Control and PreventionTreatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). November 19, 2019.https://www.cdc.gov/me-cfs/treatment/index.htmlDate accessed: December 26, 2020Google Scholar Other nations are in the process of updating their guidance, with one stating that GET should not be offered as a treatment.116

Teach PacingPacing is an individualized approach to energy conservation and management used to minimize the frequency, duration, and severity of PEM. Because PEM is associated with poor energy production and can be instigated by a variety of stimuli (eg, physical/cognitive exertion; emotional, orthostatic, and sensory stressors),1US Institute of MedicineBeyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press; 2015.https://doi.org/10.17226/19012Google Scholar,33US Food and Drug AdministrationThe voice of the patient. A series of reports from the U.S. Food and Drug Administration’s (FDA’s) patient-focused drug development initiative. September 2013.https://www.fda.gov/downloads/forindustry/userfees/prescriptiondruguserfee/ucm368806.pdfDate accessed: December 26, 2020Google Scholar patients must carefully plan where and how to spend their limited energy. Typically, patients must decrease the total amount of their activities and restrict their exposures to PEM-inducing stimuli as much as possible. Reducing PEM can help alleviate fatigue, cognitive defects, sleep disturbances, pain, and other symptoms while helping to avoid repeated post-exertional relapses that can have a long-term impact.120Pheby D. Saffron L. Risk factors for severe ME/CFS.Biology and Medicine. 2009; 1: 50-74Google Scholar,121

These may include activity-pacing, sleep hygiene, pain medication, and increasing fluid and salt intake, which can help manage rapid increases in heart rate experienced by some patients when they get up from sitting or lying down.

While species of butyrate-producing bacteria decreased, there were increased levels of nine other species in ME/CFS, including Enterocloster bolteae and Ruminococcus gnavus, which are associated with autoimmune diseases and inflammatory bowel disease, respectively.

Furthermore, the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS. Recently, 21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by ME/CFS.

A current mainstay of treatment for ME/CFS — including that triggered by COVID-19 — is activity pacing, in which patients learn to stay within their “energy envelopes” in order to avoid post-exertional malaise, a worsening of all symptoms with exertion. The use of “graded exercise” is no longer recommended, per UK and US guidelines.

PEM can be addressed by activity management, also called pacing. The goal of pacing is for children with ME/CFS to learn to balance rest and activity to avoid PEM flare-ups caused by exertion that they cannot tolerate. To do this, patients need to find their individual limits for mental and physical activity. Then they need to plan activity and rest to stay within these limits. Some patients and doctors refer to staying within these limits as staying within the “energy envelope.” The limits may be different for each patient. Keeping activity and symptom diaries may help patients find their personal limits, especially early on in the illness. Patients with ME/CFS need to avoid ‘push-and-crash’ cycles through carefully managing activity. “Push-and-crash” cycles are when someone with ME/CFS is having a good day and tries to push to do more than they would normally attempt (do too much, crash, rest, start to feel a little better, do too much once again). This can then lead to a “crash” (worsening of ME/CFS symptoms).

exercise is not a cure for ME/CFS.