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  1. ME/CFS Science Blog

    Protocol A Proof-of-concept Study to Evaluate the Efficacy and Safety of Rozanolixizumab to Treat [Adults] With Severe Fibromyalgia Syndrome, 2022-4, UK

    Interesting. Looks like the initiative came from the Belgian company UCB Biopharma, the producer of the drug. Some more info here: Rozanolixizumab by UCB for Fibromyalgia (Fibromyalgia Syndrome): Likelihood of Approval (pharmaceutical-technology.com)
  2. ME/CFS Science Blog

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    Looks like the initiative came from the Belgian company UCB Biopharma, the producer of the drug. More info here: Rozanolixizumab by UCB for Fibromyalgia (Fibromyalgia Syndrome): Likelihood of Approval (pharmaceutical-technology.com) So unsure if there was a connection to the mice study of Goebel.
  3. ME/CFS Science Blog

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    This seems to be the data of the replication attempt, found in supplementary material of this paper: Neutrophils infiltrate sensory ganglia and mediate chronic widespread pain in fibromyalgia | PNAS S5. Passive transfer of 8mg IgG derived from a fibromyalgia patient vs. pain free control into...
  4. ME/CFS Science Blog

    Efficacy of cognitive behavioral therapy targeting severe fatigue following COVID-19: results of a randomized controlled trial 2023, Kuut, Knoop et al

    Thanks for sharing. Doesn't change the problem in my view. The standard errors at the start of the trial were very different compared to follow-up assessments. For example, for the primary outcome, CIS fatigue, it started at 0.7 then it was 1.4 at T1 en 1.7 at T2. So it more than doubled. This...
  5. ME/CFS Science Blog

    Closed UK: DecodeME updates, was recruitment thread.

    Looks like a good decision although it is not exactly clear what exactly changed in the inclusion criteria and data analysis method compared to before.
  6. ME/CFS Science Blog

    Review Comparison of serum acylcarnitine levels in patients with [ME/CFS] and healthy controls: a systematic review and meta-analysis, 2023, Jinushi et al.

    Some background on the authors: "In the course of researching mental health problems post-COVID-19, we realized that many patients have psychiatric disorders such as depression and anxiety due to incorrect diagnosis and treatment of ME/CFS/SEID, which led us to this systematic review, in the...
  7. ME/CFS Science Blog

    Review Comparison of serum acylcarnitine levels in patients with [ME/CFS] and healthy controls: a systematic review and meta-analysis, 2023, Jinushi et al.

    For total and free carnitine levels there was mostly no difference. For free acylcarnitine they have this overview of 7 studies, if possible split up between males and females:
  8. ME/CFS Science Blog

    News from Germany

    The 2018 report by the Dutch Health Council had a statement about this, saying (translated from Dutch): "CBT and GET are not to be considered in ME/CFS as adequate by general medical standards treatments to which patients to which patients can be obliged. The choice to refrain from CBT or GET...
  9. ME/CFS Science Blog

    Fighting Post-COVID and ME/CFS – development of curative therapies, 2023, Scheibenbogen et al

    They discuss phase II trials of immunoadsorption, vericiguat, prednisolone and Hyperbaric oxygen therapy The trials will be accompanied by a biomarker program. Basically, they will test a lot of things before and after the trials: "neurocognitive and autonomic testing, multimodal MRI of the...
  10. ME/CFS Science Blog

    Fighting Post-COVID and ME/CFS – development of curative therapies, 2023, Scheibenbogen et al

    Sounds interesting. Quote from the paper: "Clinical trial platforms or networks would allow proof-of-concept clinical trials with various drugs in a harmonized manner using similar diagnostic criteria, evaluation tools, clinical outcome criteria and pre-enrolment phenotyping of patients to...
  11. ME/CFS Science Blog

    Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

    The entire results section is all about one patient named Eric who recovered after what seems to be a 3-day course of the LP. "We have chosen to present the results in this paper through one participant’s story" the authors say. Not sure what this has to do with science.
  12. ME/CFS Science Blog

    Norwegian journal for journalists covers the ME debate

    I think Trude Schei of the ME Association does a good job at countering the issues raised. She said: "I think it's terribly sad if someone reacts badly, you shouldn't, but at the same time I can't help but think of a small child teasing another, and when the other child retaliates, the one who...
  13. ME/CFS Science Blog

    Norwegian journal for journalists covers the ME debate

    Sad to read. I don't think angry or aggressive comments on social media are helpful for ME/CFS advocacy. On the other hand the journalists do not seem very interested in learning about the arguments and view of the patient community. One of them seems to say that patients don't want a debate...
  14. ME/CFS Science Blog

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    Agree that this is a major issue that hopefully will still be corrected. It should be feasible to invite those patients selected by questionnaires to a clinical evaluation. This is how the US prevalence studies were done.
  15. ME/CFS Science Blog

    Major Depressive Disorder and CFS Show Characteristic Heart Rate Variability Profiles Reflecting Autonomic Dysregulations, 2023

    There were 49 patients with MDD, 44 with CFS and 46 controls. CFS patients had lower HF at rest than controls but compared to MMD it was a modest reduction.
  16. ME/CFS Science Blog

    Detection of Elevated Level of Tetrahydrobiopterin in Serum Samples of ME/CFS Patients with Orthostatic Intolerance: A Pilot Study 2023,Gottschalk ea

    According to the paper tetrahydrobiopterin (BH4) has not been tested in CFS yet. It is involved in amino acid metabolism and the production of nitric oxide (NO) in endothelium. These seem to be the main results:
  17. ME/CFS Science Blog

    Usefulness of an abnormal cardiovascular response during low-grade head-up tilt-test for ... adolescents with chronic fatigue ..., 2007, Wyller et al

    It look like these were just greater increases in heart rate and blood pressure in the ME/CFS group compared to healthy controls. Perhaps it could be the result of deconditioning/being less fit?
  18. ME/CFS Science Blog

    Chronic fatigue: What investigations? And what for? 2023 Gramont et al

    From the English abstract: "Chronic fatigue syndrome (CFS), in the current state of knowledge, cannot be considered as a specific pathological entity distinct from idiopathic chronic fatigue states, and does not have validated biomarkers." "The metabolic and cardiorespiratory exercise test...
  19. ME/CFS Science Blog

    Parents want ban on treatment to unlearn 'autistic behaviour' - NOS

    Thought that this article on the Dutch public broadcast was quite interesting. It is about the problems with Applied Behavior Analysis (ABA) as a treatment for autism. Here's a short quote from the (english translated) article: "The complaints to the LBVSO showed that three quarters of the...
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