Does new ME/CFS research finally prove that long Covid is the same thing?

A research paper into myalgic encephalomyelitis (ME/CFS) has claimed that the majority of long Covid patients live with it – and that Covid-19 has exacerbated the number of people living with this debilitating illness.

ME/CFS: a debilitating illness

Myalgic encephalomyelitis (ME/CFS) is a debilitating condition often triggered by viruses, which can rival cancer and late-stage AIDS in severity.

It’s a chronic systemic neuroimmune disease which affects nearly every system in the body. As a result, it causes a range of symptoms that hugely impact patients’ daily lives. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

Now, researchers have shed some light onto the effects of the Covid-19 pandemic on the number of people living with ME/CFS – and how long Covid could be related.

A new study

The research paper “Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis” explores the relationship between SARS-CoV-2 infection and the onset of ME/CFS. It leverages data from the RECOVER-Adult observational cohort study in the US, involving over 15,000 participants.

The study aimed to determine:

1. The incidence rate of ME following SARS-CoV-2 infection.
2. The prevalence of ME in infected versus uninfected participants.

Participants were categorised into:

1. Acute infected: Enrolled within 30 days of SARS-CoV-2 infection.
2. Post-acute infected: Enrolled over 30 days after infection.
3. Uninfected: Documented negative for SARS-CoV-2.

Exclusion criteria included pre-existing ME, hospitalisation for COVID-19, and incomplete symptom data. ME diagnosis followed the 2015 Institute of Medicine criteria, based on self-reported symptoms and survey responses.

Are nearly ALL long Covid cases actually ME/CFS?

Key findings from the study included:

1. Incidence and Prevalence:
   • The incidence of ME/CFS among acute infected participants was 2.66 per 100 person-years, significantly higher than 0.93 per 100 person-years in uninfected participants.
   • The prevalence of ME was 4.5% in infected participants versus 0.6% in uninfected participants.
2. Symptom Patterns:
   • PEM was the most common symptom, reported by 24% of infected participants.
   • Cognitive impairment, unrefreshing sleep, and fatigue were also prevalent among those with ME.
3. Demographics and Risk Factors:
   • ME was more common among white females aged 46–65, living in rural areas, with lower educational attainment, and less likely to be vaccinated.
   • Comorbidities such as chronic pain, fibromyalgia, and autonomic dysfunction were higher among ME participants.
4. Long COVID Overlap:
   • Nearly 89% of ME cases met the criteria for long COVID, with the majority categorised in a symptom cluster characterised by severe PEM, brain fog, and other disabling symptoms.

What does the study show?

This study underscores a notable increase in ME/CFS incidence post-COVID-19 compared to pre-pandemic estimates. The overlap with long COVID suggests as a minimum shared pathophysiological mechanisms. However, what is more likely – as many patients would attest to – is that long Covid quite literally is ME, just with a different viral trigger and therefore differences in some symptoms.

The study shows that the public health threat of post-viral illness – that is, ME – has been sorely and often intentionally downplayed or ignored. This must change to protect future generations.

Featured image via the Canary