Map ME/CFS and Search ME/CFS (on ME/CFS net)
Map ME/CFS is a repository for ME/CFS data (e.g. genomics, cytokines, protein expression). Researchers around the world can access the data and use it for hypothesis generation and research.
Search ME/CFS records what biospecimens are available. ME/CFs researchers can request access to them.
NIH Intramural study
Phase 1 has almost been completed - 'conducting a cross-sectional study for deep phenotyping of infectious onset ME/CFS to identify pathophysiology'. Data analysis is mostly complete, with publications coming soon. There were 17 patients with well-matched controls.
The selection of patients was very restrictive - they needed to fit CCC, Fukuda and IOM criteria. The requirements including being sick less than 5 years, aged less than 60, and to have an infectious cause documented in medical notes were restrictive. 484 patients expressed an interest. Of the 27 patients who completed visit 1, only 17 were found to have ME/CFS. Of the 10 excluded after one visit, causes of their illness included cancer, Parkinsons, MS and an inflammatory condition.
The function of the 17 ME/CFS patient was markedly lower than those of the healthy controls (SF-36 60 for healthy controls and 22 for ME/CFS. This is despite the fact that they actually excluded candidates who were too inactive, as they didn't want to confound the results with the impact of inactivity.
Handgrip strength was pretty much the same wrt maximum force. However, the time to fatigue was generally considerably shorter in ME/CFS.
There were some charts presented on pain and the suggestion that there is increased pain sensation in ME/CFS, but it wasn't clear exactly what that means. Skin biopsies found that nerve fibre density was normal.
In the cognitive testing, the average was poorer in ME/CFS, but there was a lot of overlap. In such a small sample, there is a lot of scope for biased selection in cognitive performance. Anxiety and depression wasn't really different between ME/CFS and healthy controls. It should be noted that patients with major depression were excluded, and patients on anti-depressants had to have a stable condition. So, Im not sure that finding tells us much, other than it is possible to have ME/CFS without being anxious or depressed. Lucinda Bateman later commented that people are generally depressed and anxious in the early stages of the illness as there are a lot of losses, but, as they adapt, they return to their set point.
Physiology working group - few details. At anaerobic threshold (in a single CPET) there is a decreased work rate and rate of oxygen consumption and decreased heart reserve. These appear to be solid findings.
Immunology working group - Nath noted that it is hard to come up with a cohesive story - 'some of these things are hard to reconcile'. He was initially clear that there was no difference in NK cell function. The method used to assess NK cell function was a 'chromium release assay'. In response to a question, Nath did note that there was variation and the sample size was small and that he couldn't rule out there being subsets.
Following exercise, lymphocytes showed decreased maximal respiration and decreased spare respiratory capacity in a Seahorse study.
Asked if there was any evidence of neuroinflammation, Nath said that immune abnormalities were found (that is as specific as he got).
When asked if there was anything that was surprising or something that needs further investigation, Nath replied that there was a big difference between the pathways in men and women, and that it is important to separate out the two populations. Which might be true, but is a disappointing answer, suggesting that data in this very small sample has to be sliced into even smaller groups in order to find trends.
Walitt was singled out for special thanks for his role in running the study.
. Hope someone with a bit more energy does a write-up.
