Medical Matters > Is M.E. (also known as Enteroviral Encephalomyelitis) a Post-Acute Infection Syndrome (PAIS) ? Answer: NO it's a "Sudden Onset" neurological disease "Myalgic Encephalomyelitis" involving : "Enteroviral Encephalomyelitis / Enteroviral Meningo-Encephalomyelitis" or "Enteroviral" Poliomyelitis-like Syndrome, when "overlapping" with "Poliomyelitis" requiring "emergency inpatient hospitalization"
Medical Matters > Is M.E. (also known as Enteroviral Encephalomyelitis) a Post-Acute Infection Syndrome (PAIS)?
I see that M.E. (also known as Enteroviral Encephalomyelitis) and Long COVID are now sometimes being referred to as being a post-acute infection syndrome. Why is this?
And following on from this question, one important action in the generally disappointing research section of the DHSC Delivery Plan is to fund research into "post-acute infection syndromes".
So is this good or bad news for people with M.E. (also known as Enteroviral Encephalomyelitis) (BAD NEWS for PwME) if we are going to be lumped in together with all kinds of post-infective conditions?
Answer
As you indicate, there are a considerable number of long-lasting illnesses that begin after someone fails to properly recover from an infection - often a viral infection.
Two of the well-known examples are ME/CFS (SEID Algorithm)...
...and Long COVID. Other good examples of infections that can cause a PAIS include Brucellosis, Lyme Disease, Polio (Post-polio Syndrome) and Q Fever.
These syndromes can also follow tropical infections such as chikungunya, dengue fever and Ebola virus infection – helping to disprove that these "post-infection syndromes" are just diseases of the affluent people living in developed countries.
In addition to symptoms such as "fatigue", "cognitive dysfunction", "sleep disturbance" and "pain" that are commonly found in most or all of "these syndromes".
Researchers have identified a number of potential causative factors that are often present.
These include:
- Neuroinflammation - meaning inflammation of nervous system tissues: Possibly as a result of continuing low-level activation of the body’s immune system.
- Mitochondrial dysfunction: A reduced capacity to generate adenosine triphosphate (ATP), the primary energy source for cells, leading to a decrease in physical and mental performance.
- Immune dysfunction: This can include persistent inflammation, reactivation of latent viruses (such as Epstein-Barr virus), and the presence of autoantibodies - which attack the body’s tissues.
- Endothelial dysfunction: Disruption of blood flow and the blood-brain barrier, contributing to cognitive and cardiovascular symptoms.
- Gut dysbiosis: An imbalance in the gut microbiome that may perpetuate generalised inflammation.
- Oxidative stress: An imbalance between the production of free radicals and the body’s ability to neutralize them, leading to cellular damage and disease.
So the simple answer to your second question is yes (This is FALSE - NO IT IS 'NOT'), there are likely to be advantages for people with ME/CFS (SEID Algorithm) by allocating a part of the research pot to research that involves ME/CFS (SEID Algorithm) as well as Long COVID, and possibly some of the other post-infection syndromes.
Why would anybody listen to this buffoon about M.E. (also known as Enteroviral Encephalomyelitis) ?
Who only has expertise in 'Herpes Zoster Encephalitis' though lived experience.
Given the huge amount of money that has gone to Long COVID research over the past five years, along with research interest from researchers who had never been interested in these conditions before, this is likely to be good news for people with ME/CFS (SEID Algorithm) - providing research that specifically targets ME/CFS (SEID Algorithm) also carries on.
- Dr. Shepherd took part in an American podcast with Dr. Ken Friedman in August where they discussed PAIS and the overlaps between Long COVID and ME/CFS (SEID Algorithm)
The Problem of "Conflating" M.E. (also known as Enteroviral Encephalomyelitis) with "ME/CFS" (SEID Algorithm) or subsuming Long COVID into PAIS)
Conflating sudden onset Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) with broader frameworks like ME/CFS (defined by the SEID Algorithm) or Long COVID (Post-Acute Infection Syndromes / PAIS) creates a critical medical failure:
- Erasure of Acute Emergency Interventions: Broad algorithms like SEID and PAIS define conditions as "post-acute," assuming the primary infection or inflammatory insult has already resolved or stabilized. When emergency departments and neurologists apply a "post-acute chronic illness" label to a patient experiencing a sudden-onset enteroviral neuroinflammatory crisis, they fail to provide urgent inpatient care, antivirals, and acute immunomodulatory therapies - missing the critical therapeutic window.
- Exclusion of the Underlying Pathology: Non-Diagnostic criteria like SEID explicitly function as a "diagnosis of exclusion," lumping patients under generalized symptom checklists (like fatigue and exertion intolerance) while actively excluding diagnosable neurological diseases like M.E.. This shifts the medical focus away from investigating active viral persistence or brainstem inflammation toward merely managing long-term chronic symptoms.
- Institutional Negligence and Missed Root Causes: Treating a dynamic, ongoing neuro-immune infection as a static "post-viral fatigue" or "post-acute recovery phase" leads to delayed diagnostics, missed root causes, gaslighting of acute patients, and significantly worse patient outcomes. The acute phase and the post-acute phase represent fundamentally different physiological events that require entirely separate medical strategies.
Subsuming Long COVID into the broad bucket of "Post-Acute Infection Syndrome" (PAIS) presents several severe medical, diagnostic, and political problems, as detailed in this graphic:
1. Erasing COVID-19’s Unique Biological Footprint
- Loss of Disease Specificity: Rebranding Long COVID as generic "PAIS" strips away its unique biological drivers - such as SARS-CoV-2 viral persistence, organ damage, spike protein pathology, specific vascular clotting, and SARS-CoV-2-driven immune dysfunction.
- Impact on Diagnostics: As Dr. Markus Fraczek highlights, if Long COVID is truly a distinct illness, it must be diagnosable through its own distinctive biological features rather than relying solely on knowing the patient had a prior COVID infection. Flattening it into PAIS ignores SARS-CoV-2-specific mechanisms.
2. Hindering Targeted Research and Treatment
- Subsuming Key Deliverables: Over-generalizing under an umbrella banner risks setting back specialized progress in diagnosis, research, treatment, recognition, and patient advocacy.
- One-Size-Fits-All Failure: Broad categories assume post-viral illnesses share identical pathomechanisms, which leads to generic management plans rather than targeted biomedical cures tailored to specific pathogens or organ systems.
3. Repeating the Historical Pattern of "Conflation and Erasure"
- The Hijacking Parallel: Activists argue that what is currently happening to Long COVID mirrors what previously happened to M.E. (also known as Enteroviral Encephalomyelitis) and Holmes CFS.
- Loss of Distinct Disease Entities: Historically, specific viral encephalitic diseases (like enteroviral M.E. or abortive poliomyelitis-type illness) were conflated into broad symptom-based algorithms (like "ME/CFS" or SEID). Lumping Long COVID into PAIS repeats this cycle by erasing disease-specific identities under a umbrella term.
4. Shifting from "Acute Pathology' to "Post-Acute" Symptom Management
- Ignoring Active Pathology: Terming an illness "post-acute" assumes the primary viral insult or active infectious process has completely resolved.
- Medical Abandonment: For patients with ongoing viral activity, organ damage, or acute-phase dynamics, applying a generic "PAIS" label shifts the medical goal from investigating and treating active pathology to simply managing chronic downstream symptoms.
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