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  1. Science For ME

    Unpleasant taste

    Added October 2021 A member noted in September 2019: "Sometimes when I'm in a crash (either due to overexertion, or to a different, unidentified factor), I experience an unpleasant taste in my mouth. This makes water taste rather unpleasant. It's weird. Does anyone else get this?"
  2. Saz94

    NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

    @Jonathan Edwards it seems they are trying to forcibly limit their "evidence" to psychosocial trials, what can we do about this?
  3. Saz94

    Trial of CT38 for ME/CFS by Cortene Inc.: big claims being made...

    From the registration of the trial: "The primary endpoint will be the change in the average total daily symptom score (TDSS), over 28-day periods immediately prior to the first treatment (pre-treatment) and immediately prior to exit from the trial (post-treatment). The TDSS is the sum of 13...
  4. Saz94

    Trial of CT38 for ME/CFS by Cortene Inc.: big claims being made...

    Just because CRF2 activation is necessary & sufficient to produce learned helplessness, that doesn't mean that LH is the only thing that it can cause. Just did a bit of googling and there seemed to be plenty of other things mentioned in relation to CRH (corticotropin releasing hormone).
  5. Saz94

    Andy's attempt to create a reasonable descriptive model of ME.

    THIS, this is the most important question in my opinion. It's the most bizarre medical thing that I've ever heard of, it seems to defy all 'standard' understanding. It seems unbelievable to people. Physically, there is at least some kind of precedent in terms of overtraining and injury and...
  6. Saz94

    Basic questions about metabolism

    OK so If I eat less than usual on one day, and my energy is worse, is that due to eating less or is it just a coincidence? Because doesn't it take quite a while for the body to turn your food into energy anyway? I'm trying to lose weight, but my brain is saying "go eat a packet of crisps...
  7. Saz94

    Is ME a metabolic problem or a signalling problem?

    I have personally found that treating (presumed) candida overgrowth has improved some of my ME symptoms. Presumed because I found that when I took a fluconazole for a vaginal yeast infection my cognition suddenly greatly improved - so I repeated that as an experiment a couple of times, same...
  8. Saz94

    Is ME a metabolic problem or a signalling problem?

    That could potentially explain the anecdotal reports of certain meds and supplements being helpful. Magnesium reduces the effects of glutamate by blocking NMDA receptors. LDN may increase glutamate transport. (https://www.ncbi.nlm.nih.gov/pubmed/15694688) Alpha lipoic acid increases...
  9. Saz94

    Positive Psychology; Positive Thinking

    It's always silly season in BPS-land.
  10. Saz94

    Is ME a metabolic problem or a signalling problem?

    You'd think they'd have found it by now :(
  11. Saz94

    Andy's attempt to create a reasonable descriptive model of ME.

    @Trish @Jonathan Edwards On the topic of calories and BMR... I have found that my calorie need (for an ordinary day where I am not overexerting myself) increased when I developed ME, and increased when my ME increased with severity. So I need to eat a lot of calories in order to function at my...
  12. Saz94

    Andy's attempt to create a reasonable descriptive model of ME.

    Interestingly... For some PWME, what you are talking about is the case, i.e. tiring yourself out in one muscle area leads to PEM in the whole body. But for some PWME, including myself, it will usually only lead to PEM in that particular muscle area. It is quite common for me to say "I have PEM...
  13. Saz94

    Positive Psychology; Positive Thinking

    If optimism can make you live longer, then I'll stop trying to be optimistic.
  14. Saz94

    New blood test for pain

    It would be very useful in some situations. I know somebody who has a severely autistic son who cannot communicate much at all. He recently had a brain tumour removed. Him not being able to communicate pain is a big worry for them. They would not know if he was understanding the question "are...
  15. Saz94

    ME/CFS services in the United Kingdom

    Lots to unpack here, but just gonna point out that that isnt even their usual definition of a boom bust cycle. That just sounds like a bust and more bust cycle.
  16. Saz94

    New blood test for pain

    Or they will just refuse and say the blood test is unnecessary because I don't believe you are in pain and I don't want to encourage your illness beliefs
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