A Comprehensive Examination of Severely Ill ME/CFS Patients Published: 29 September

[SWAlexander]

Abstract

One in four myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients are estimated to be severely affected by the disease, and these house-bound or bedbound patients are currently understudied. Here, we report a comprehensive examination of the symptoms and clinical laboratory tests of a cohort of severely ill patients and healthy controls. The greatly reduced quality of life of the patients was negatively correlated with clinical depression. The most troublesome symptoms included fatigue (85%), pain (65%), cognitive impairment (50%), orthostatic intolerance (45%), sleep disturbance (35%), post-exertional malaise (30%), and neurosensory disturbance (30%). Sleep profiles and cognitive tests revealed distinctive impairments. Lower morning cortisol level and alterations in its diurnal rhythm were observed in the patients, and antibody and antigen measurements showed no evidence for acute infections by common viral or bacterial pathogens. These results highlight the urgent need of developing molecular diagnostic tests for ME/CFS. In addition, there was a striking similarity in symptoms between long COVID and ME/CFS, suggesting that studies on the mechanism and treatment of ME/CFS may help prevent and treat long COVID and vice versa.
More at: https://www.mdpi.com/2227-9032/9/10/1290

 

[Martin aka paused||M.E.]

cohort of severely ill patients and healthy controls

Very important to study this subgroup.
No pathogens. Hmmm.

which included Herpes simplex virus 1 and 2 (HSV1/2, HHV1/2), Epstein-Barr Virus (EBV, HHV4), Cytomegalovirus (CMV, HHV5), Human Herpesvirus 6 and 7 (HHV6/7), and Primate Erythroparvovirus 1 (Parvovirus B19, B19).
(...)
Lyme disease antibody tests were performed at Quest Diagnostics
(...)
Mycoplasma pneumoniae IgG and IgM antibodies were tested by Quest Diagnostics. Bartonellatests were performed at Galaxy Diagnostics

No test for enteroviruses. Why?

 

[SWAlexander]

Very important to study this subgroup.
No pathogens. Hmmm.

No test for enteroviruses. Why?

I have no idea.

I ordered, in addition to another Vit-D test, a „BiomCheck“ from www.biomcheck.de.
For 10 days I´m trying something new. Maybe by next week, I can report some news about why I have gradually more energy. Still testing.

 

[Pyrrhus]

Thanks for posting this (Chang et al., 2021) paper!

It's certainly nice to see Andreas Kogelnik's name included on the paper.
(Andreas Kogelnik is the founder of OMF.)

Am I correct in assuming that this is the first publication from the "Big Data Severely Ill Patient Study"?

No test for enteroviruses. Why?

Ron Davis said that they didn't have the laboratory expertise to study RNA viruses.
RNA viruses are notoriously difficult to study in the laboratory.

 

[Martin aka paused||M.E.]

RNA viruses are notoriously difficult to study in the laboratory.

In a PCR yes. But they did AB tests only

The tests of IgG and IgM antibodies against viruses were conducted at Quest Diagnostics

 

[Pyrrhus]

In a PCR yes. But they did AB tests only

That's a good point.

Maybe they figured that it would be too expensive to test for the more than 70 different known enteroviruses out there, especially since most enteroviruses do not have any validated antibody test available?

Also quite interesting:

It is worth noting that certain pathogens are neurotropic and evidence of central nervous system (CNS) infection is not always revealed by serologic studies of blood. Further analysis of autoantibodies and detections of pathogens (e.g., by sequencing) in the relevant tissues, such as in the cerebrospinal fluid (CSF), will likely provide new insights into the link between pathogen exposure and ME/CFS.

 

[Martin aka paused||M.E.]

Maybe they figured that it would be too expensive to test for the more than 70 different known enteroviruses out there, especially since most enteroviruses do not have any validated antibody test available?

Since you can only test for a few and it's quite cheap (around 30-40$ for each) that would be a very disappointing reason. I think they just didn't think of it.

I think the quote by Davis also refers to qPCR tests of peripheral blood. Quite interesting that he says this in the light of his skepticism that any pathogen is involved in the etiology of ME.

 

[5vforest]

Having done a lot of pathogen testing for myself, I am disappointed by the list of tests that they performed as part of this study. I really hope it won’t be used as evidence that there are no pathogens involved in ME/CFS.

On the plus side, they do mention storing samples for use in future publications. Maybe someone will come along and test the samples for enterovirus in the future?

 

[SWAlexander]

That's a good point.

Maybe they figured that it would be too expensive to test for the more than 70 different known enteroviruses out there, especially since most enteroviruses do not have any validated antibody test available?

Also quite interesting:

My husband had a spinal tap and latent TB was found. The reason I´m aiming for sequencing the cerebrospinal fluid (CSF) for pathogen exposure is; 1955, I was a little child, most of the people in our small city were very sick after the river flooded and many dead animals were found in it. This river was also the drinking water supply.

 

[Rufous McKinney]

No test for enteroviruses. Why?

need biopsies.....maybe...probably needed bioopsies for ALL The pathogens

 

[Rufous McKinney]

I had a question:

what constituted the General CFS patient???????

which is not described, but they present some data.

Maybe it comes from "other studies" somebody else did....using an undefined general CFS cohort.