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  1. J

    Trial Report REGAIN: A Randomized Controlled Clinical Trial of Oxaloacetate for Improving the Symptoms of Long COVID, 2025, Vernon et al

    The benaGene one? My understanding is they have some kind of patent for stabilizing it with vitamin C and that's why they can sell it for ridiculously expensive, but it may also work better than other oxaloacetate supplements if such have been on the market.
  2. J

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    Given that a whopping one in eight American adults have now tried a GLP-1 agonist, we have a huge sample size for these type of drugs already, which means their side effects are already quite well understood. https://edition.cnn.com/2024/05/10/health/ozempic-glp-1-survey-kff
  3. J

    Can small fiber neuropathy present like ME/CFS?

    Autonomic neuropathy? I have a difficult time understanding my OI symptoms as well. All that is obvious to me is that it is related to the same crappy immune response that causes my ME/CFS symptoms and that temporarily almost goes away when I get stuck with an acute cold. When my POTS was bad...
  4. J

    Can small fiber neuropathy present like ME/CFS?

    Yes. SFN was one of my first ME/CFS symptoms. I went to various doctors complaining about it, but none of them were much interested to do anything beyond an EMG, which cannot diagnose SFN type of neuropathy. Oh well, not different to ME/CFS in that regard. Just another symptom that lots of...
  5. J

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    I completed the survey. I noticed some improvement in symptoms like brain fog, motivation and mental energy with nicotine. We'll see if that's just the stimulant effect or if it will last. Nicotine does bind to nicotinic acetylcholine receptors, which could help with cholinergic stimulation and...
  6. J

    Artificial intelligence in medicine and science

    With all the risks including garbage in garbage out, I'd still take AI over a handful of BPS proponents having the largest say in how diseases like ME/CFS are treated. At least the AI doesn't come with an inability to understand or a complete ignorance of the biology part in the BPS model. Even...
  7. J

    Repurposing Drugs for Post–COVID-19 Fatigue Syndrome Methylphenidate, Duloxetine, and Brexpiprazole, 2022, Manu

    Yeah, the study was preliminary, small and low-quality, which isn't surprising since nobody from my knowledge did any groundwork or even attempted to look at Abilify and ME/CFS connection despite the drug existing for 20 years. I don't even have particularly high hopes for that one, but again...
  8. J

    Repurposing Drugs for Post–COVID-19 Fatigue Syndrome Methylphenidate, Duloxetine, and Brexpiprazole, 2022, Manu

    Changing the brains of sufferers is exactly what you want to do if it turns out the underlying pathology in ME/CFS and long COVID lies in the brain. It has not been demonstrated, but there at least aspects of the disease that point to that such as ANS dysfunction, brain fog and some...
  9. J

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    It is very curious indeed. One hypothesis often speculated about in Lyme communities and elsewhere was that those blood thinning supplements exposed pathogens that were hiding and forming biofilms and as a result you got a Herxheimer reaction. But like you, I never got better either. One would...
  10. J

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Yeah, I think the deformability is probably a consequence of something else. I trialed pentoxifylline, which supposedly aids in deformability, but it didn't help me much. What helped me temporarily was supplementing with fibrinolytic enzymes like bromelain or nattokinase. I felt a massive...
  11. J

    Oxaloacetate

    Oxaloacetate pills are hard to find, I have only seen Benagene brand available and it gets expensive really quickly as someone pointed out. I had more or less the same results or actually better just by consuming spinach (aka the Popeye protocol). Spinach contains oxalic acid or oxalate, so not...
  12. J

    BPS proponents don't respond well to criticism

    Sadly this has become practice among some other online stores as well. I heard some Amazon sellers contact people who make bad reviews. They even go as far as to bribe them to get the review removed. Would be interesting to hear how much Malmquist is ready to pay. :) Anyway, what this clearly...
  13. J

    Why does it take years to move down a level of ME?

    Aging could also impact (in positive or negative way) if the change is observed over several years or decades. Naviaux observed how a person's metabolism is very different in their 20's or 30's compared to later in life. The immune system is also changing over the years, which is one reason why...
  14. J

    ‘Help Holger now’ video about a Swedish man with very severe ME

    It seems to have worked at the higher instance, but it's still a big fail in my books if a very sick patient has to constantly go through this (reading back this thread he was threatened with sectioning from a different clinic six months ago). The failure were the psychiatrists at the health...
  15. J

    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    I find it curious though that some long covid patients are reporting improvement or even recovery following one of the vaccines. The hypothesis I've heard for this is that the vaccine promotes a strong enough immune response to clear whatever is left of the (chronic) coronavirus infection and...
  16. J

    Aripiprazole - Abilify

    We seem to all agree that RCTs are much needed. As I pointed out in the other thread, psychiatrists in Europe aren't keen on prescribing Abilify for other than psychosis and schizophrenia. Having said that, the same doctors are prescribing low-dose quetiapine for sleeping, it's widespread...
  17. J

    Off label use of Aripiprazole shows promise as a treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Crosby et al. 2021

    It sounds like a crappy situation, but I wonder if they are not in contact with the right people. For example, there was recently a double-blinded drug trial registered for Solriamfetol specifically in the treatment of ME/CFS (ref). If it's possible to get this done for this type of drug it...
  18. J

    Aripiprazole - Abilify

    Yep, so exactly the same guideline as in Finland. The only reason I point this out is that for people reading this thread, they shouldn't think they can just walk into the doctor's office and complain about a little depression and hope to get Abilify. The medical records are the other issue...
  19. J

    Aripiprazole - Abilify

    Abilify is only indicated for psychosis or schizophrenia here, maybe the US for example has classified this differently. For depression it would be possible to obtain, with a big if, as a last resort option if you have gone through all other medications, but it would still be off-label and...
  20. J

    Aripiprazole - Abilify

    Must be quite down to luck though finding a doctor willing to prescribe antipsychotics off-label. In general doctors are very hesitant to prescribe anything off-label here in Finland and when they do, they feel they risk getting their license taken away. I think the situation is a bit similar in...
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