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  1. cassava7

    Severe difficulties with eating in ME/CFS

    I do not think so. There is Steinsvik’s recently published small study on a subset of patients from the RituxME trial who have functional dyspepsia, which significantly overlaps with gastroparesis in terms of symptoms, but according to the literature only about 30% of patients with FD exhibit...
  2. cassava7

    Severe difficulties with eating in ME/CFS

    I had much the same experience with trying to get a NJ tube. The hospital staff — and I was hospitalized at a nutrition department — said it would make my stomach lazy. I would tend to think, too, that the problem of gastrointestinal motility probably extends beyond gastroparesis. I assume the...
  3. cassava7

    Severe difficulties with eating in ME/CFS

    This feels surreal to read to me as I found myself in the exact same situation just over a month ago. The hospital staff eventually let me try tube feeding at an angle of 15 degrees (though I lowered it to 10 when they were away), but I couldn’t continue as I didn’t tolerate nasogastric feeding...
  4. cassava7

    Severe difficulties with eating in ME/CFS

    There have been a couple of papers on delayed gastric emptying (gastroparesis) in CFS: Burnet, R.B., Chatterton, B.E. Gastric emptying is slow in chronic fatigue syndrome. BMC Gastroenterol 4, 32 (2004). https://doi.org/10.1186/1471-230X-4-32 (Abstract only) Gastric emptying in patients with...
  5. cassava7

    Different risk factors distinguish myalgic encephalomyelitis/chronic fatigue syndrome from severe fatigue 2023, Palacios, Komaroff

    Yet the prevalence of CFS is low in this cohort - 0.24% (102/41802), which is only slightly more than half than the UK Biobank’s 0.42% rate.
  6. cassava7

    Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of CFS 2023 Chen et al

    There may or may not be a biological link between ME/CFS and psychiatric disorders, but the study was not designed to answer this question. It should have compared the prevalence of anxiety and depression among people who have gone on to be diagnosed with CFS versus those who presented with...
  7. cassava7

    Presence of depression and anxiety with distinct patterns of pharmacological treatments before the diagnosis of CFS 2023 Chen et al

    A simpler explanation would be that patients who go on to be diagnosed with CFS are given diagnoses of anxiety or depression beforehand because of their unspecific but disabling symptoms (fatigue, pain etc) that stand in contrast with their routine blood tests showing normal results. This is...
  8. cassava7

    Der Spiegel—Sucessful-ish? Treatment of a German MECFS patient

    Interestingly, Fycompa is an AMPA receptor antagonist that downregulates glutamate, which is the main excitory neurotransmitter. Perhaps the neurologist(s) who prescribed it to Faraz thought that it would help calm some of the “brain and small fiber neuropathy” related symptoms he mentioned in a...
  9. cassava7

    Persistent physical symptoms after COVID-19 infection and the risk of Somatic Symptom Disorder 2023 Horn et al

    I wasn’t aware that the university hospital of Lille — in northern France, where most of the authors are based — had a psychosomatic approach to long Covid. So far, it had mostly been pushed by Profs Lemogne and Ranque from Paris. Sad to see.
  10. cassava7

    Homeopathy can offer empirical insights on treatment effects in a null field, 2023, Sigurdson et al

    Perhaps this should prompt some reflection on trials of interventions in other fields that are riddled with biases but achieve the same standard deviation of around 0.3 to 0.4 in favour of the intervention. From the 2008 Cochrane review of CBT for CFS:
  11. cassava7

    Der Spiegel—Sucessful-ish? Treatment of a German MECFS patient

    Thread in English: Of note, the FDA has issued a black box warning for Fycompa (perampanel): https://www.accessdata.fda.gov/drugsatfda_docs/label/2016/202834s011lbl.pdf
  12. cassava7

    Antidepressants Use for Chronic Pain on the Rise, but Are They Effective?

    It seems to me that even if low dose antidepressants can be effective in the short term (up to a few weeks or months), tolerance gradually builds and renders them ineffective in the long term, unless the dose is increased. The same goes for pregabalin and gabapentin. Unfortunately, clinical...
  13. cassava7

    Gastric dysmotility and gastrointestinal symptoms in myalgic encephalomyelitis/chronic fatigue syndrome 2023 Steinsvik et al

    I can certainly attest to these findings. https://www.s4me.info/threads/digestion-issue-causing-overexertion-and-severe-weight-loss.31676/ It would have been interesting to have the patients undergo a gastric emptying scintigraphy (the gold standard for diagnosing gastroparesis) but it is a...
  14. cassava7

    Circulating microRNA expression signatures accurately discriminate [ME] from fibromyalgia and comorbid conditions 2023 Moreau et al

    Looking at Figure 2, it seems that a better title for this article would be “Circulating microRNA expression signatures accurately discriminate fibromyalgia from healthy controls and comorbid conditions”. In terms of statistical significance, patients with ME/CFS have the same relative miRNA...
  15. cassava7

    Cochrane: Physical interventions to interrupt or reduce the spread of respiratory viruses, 2023, Jefferson et al

    Trials of masking in one particular setting (e.g. at a hospital or a school) are always bound to be flawed because, even if the participants perfectly adhere to it, they will remove their masks in other settings where transmission is just as high (e.g. at home with children). This confounding...
  16. cassava7

    UK: Dr Sarah Myhill

    My understanding was that Myhill has practiced as a naturopath since she was struck off the GMC register and, to my knowledge, this profession is both unlicensed and unregulated in the UK. Is this correct? If so, this suspension won’t affect her business.
  17. cassava7

    Digestion issue causing overexertion and severe weight loss

    I hope it will give me more leverage to ask for a nasojejunal tube. Contrary to the nasogastric one they have placed, this would bypass the stomach by feeding me directly into the small intestine. The medical team has been opposed to it, so I don’t know how it will go. I am in Paris, France...
  18. cassava7

    Digestion issue causing overexertion and severe weight loss

    Thank you all for your kind replies. I have tried the Super digestive enzymes from Now Foods to no avail, and my liver function is being monitored regularly by the hospital team as I am being refed and is fine. The gastric emptying scan showed that I do, in fact, have gastroparesis. The...
  19. cassava7

    List of rare and uncommon diseases: differential and mis – diagnosis in ME/CFS

    I recall that Sanofi either gave a grant to Crawley or is running a study with her at the University of Bristol on detecting Pompe disease in children diagnosed with ME/CFS. Sanofi’s incentive is financial as they sell a very expensive treatment for the disease. There has been at least one case...
  20. cassava7

    Radical rest: evidence and anecdotes

    When I was 6 months into mild ME, I had to decide between starting a PhD or staying at home with my parents to rest. I chose the former, but I wish I had chosen the latter — it made me fully housebound and I had to stop working a year into my PhD. It is a tough decision due to the serious...
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