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  1. J.G

    Aripiprazole - Abilify

    If I had to quantify it, for me Abilify gave a sustained ~3-5% increase in my capacity to function and quality of life, undiminished over time. I know that doesn't sound like much, but for me it's the difference between being completely zombified around the clock and, with "aggressive" resting...
  2. J.G

    Aripiprazole - Abilify

    An end of year update from me. I'm close to 18 months in, and Abilify continues to be effective. I take 0.25mg/daily. The cognitive gains I described a year ago have held and even expanded somewhat. No doubt strict pacing has been a factor in this too. To be sure, I still have severe ME, and...
  3. J.G

    StatPearls: Continuing Education Activity: Chronic fatigue syndrome

    I checked back on the article; it's still peppered with BPS lingo and theorem. The passages quoted by @Sly Saint above are unchanged. However I note its new inclusion of two sentences: Regarding the PACE trial: And concerning CBT and GET in general: Should we wish to address the article's...
  4. J.G

    StatPearls: Continuing Education Activity: Chronic fatigue syndrome

    It certainly looks that way. I sent them a polite message explaining, in a few lines, the controversy surrounding the PACE trial and the limitations of CBT for MECFS. I received a response stating they will consider revising the article.
  5. J.G

    StatPearls: Continuing Education Activity: Chronic fatigue syndrome

    GET and CBT. How are we still not past this. Unbelievable. :arghh:
  6. J.G

    Long Covid in the media and social media 2022

    Came across this video on my YouTube feed today. SciShow seem to get it :)
  7. J.G

    Open Medicine Foundation (OMF)

    If you can't recapture Jerusalem, might as well sack Constantinople instead, right?
  8. J.G

    No signs of neuroinflammation in women with [CFS] or Q fever fatigue syndrome using the TSPO ligand [11C]-PK11195, 2021, Raijmakers, Knoop et al

    It is important to remember that the BPS lobby is particularly powerful in the Netherlands and that many professionals active in the field of CFS have a vested interest in finding negative or null biomedical results.
  9. J.G

    Aripiprazole - Abilify

    It's interesting. The medical memoir "Awakenings" on encephalitis lethargica by Dr. Sacks has been on my mind. Sacks treated survivors of the 1920s "sleeping sickness" epidemic many decades later, in the 1960s, with then newly discovered drug l-DOPA. Some patients proved responsive to an extent...
  10. J.G

    United Kingdom: Oxford Health NHS Foundation Trust; Oxford University Hospitals ME/CFS service

    I emailed them about the surprising omission of PEM (ie. the hallmark of the disease) on the MECFS symptoms list. I received a response thanking me for drawing attention to it.
  11. J.G

    Aripiprazole - Abilify

    Yap, low-dose aripiprazole is not a silver bullet. And while I'm reluctant to place agency with a drug's end-user, I do think it's important to use Abilify the right way. Which is to say: If I look back at my increasingly desperate self from 5+ years ago who tried to juggle an advancing illness...
  12. J.G

    Aripiprazole - Abilify

    An update from me. I've been on Abilify 0.2mg/day five months now, and I'm still (much) better than I was prior to starting the med. To qualify this: since starting Abilify, I can have PEM-free short conversations with family, write the occasional short email or forum post and watch for example...
  13. J.G

    Implications of Antimuscarinic Autoantibodies in Postural Tachycardia Syndrome, 2021, Li et al

    This seems to be the same group / lead author that previously reported adrenergic autoantibodies in POTS (Li et al. 2014). They also found both adrenergic and muscarinic autoab in orthostatic hypotension (Li et al. 2012).
  14. J.G

    Covid-19 vaccination experiences

    I had my second Pfizer jab earlier this week; like the first, it was uneventful and anticlimactic, giving me a seriously sore arm but thankfully not the temporary worsening of ME symptoms that I had anticipated. My perfectly healthy parents had far more side effects (on Pfizer and AZ...
  15. J.G

    A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of ME/CFS (2017) Nilsson et al.

    I revisited this paper with recent insights into apipiprazole (Abilify) in mind. Both OSU6162 and Abilify are dopamine system stabilisers that also exercise serotonergic effects. They work as partial agonists on some of the same receptor subclasses. If I have my facts straight, both were...
  16. J.G

    Covid-19 vaccination experiences

    Ah, yes. It was this video interview with Dr. Gottfries that I watched forever ago. And my timeline was off by a decade or two - late 1950s, not the 1970s! ;) Edit: PR has a lengthy 11-year old thread on the subject here that I never knew existed.
  17. J.G

    Covid-19 vaccination experiences

    There's this story of a doctor who contracted ME in the 1970s / 1980s and found that, for whatever reason, intermittently injecting himself with one vaccine or another kept his symptoms in check. Eventually that particular type of vaccine stopped being manufactured, and he had to go to great...
  18. J.G

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

    We have basically zero reliable data on ME disease progression. There's also an important distinction, I think, between those who are able to pace and manage their disease, and those who cannot but push through due to socioeconomic circumstances and/or institutional pressure and thereby drive...
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