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  1. jonathan_h
    Post

    USA: Mount Sinai PACS clinic and Dr Putrino

    That makes sense. And I can relate—I found Putrino’s thread about visiting a very severe pwME in their home very affirming and moving. My...
    Post by: jonathan_h, Apr 6, 2024 in forum: USA clinics and doctors
  2. jonathan_h
    Post

    USA: Mount Sinai PACS clinic and Dr Putrino

    Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”,...
    Post by: jonathan_h, Apr 6, 2024 in forum: USA clinics and doctors
  3. jonathan_h
    Post

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    I think it’d be helpful to have examples of this tactic to cite from the history of science (of researchers portraying themselves as dispassionate...
    Post by: jonathan_h, Mar 29, 2024 in forum: Psychosomatic research - ME/CFS and Long Covid
  4. jonathan_h
    Post

    UpToDate ME/CFS information

    Browsing Reddit forums where physicians talk amongst themselves has impressed on me the considerable influence that UpToDate has on US medical...
    Post by: jonathan_h, Mar 19, 2024 in forum: General ME/CFS news
  5. jonathan_h
    Post

    Whitney Dafoe Updates

    It’s worth noting that Whitney wrote a near-identical blog post to this a couple years ago in the wake of a major legal defeat for women’s...
    Post by: jonathan_h, Feb 1, 2024 in forum: General ME/CFS news
  6. jonathan_h
    Post

    ALS Untangled: an organisation worth emulating?

    Absolutely. If you ever get around to checking out their site, I’d be interested in your opinion of how they fare on this front. I think they do...
    Post by: jonathan_h, Jan 26, 2024 in forum: Advocacy Projects and Campaigns
  7. jonathan_h
    Post

    ALS Untangled: an organisation worth emulating?

    Many of the treatments ALSUntangled reviews have little to no clinical trial evidence either. The way they contextualize the lack of evidence, or...
    Post by: jonathan_h, Jan 26, 2024 in forum: Advocacy Projects and Campaigns
  8. jonathan_h
    Thread

    ALS Untangled: an organisation worth emulating?

    Occasionally, I read other disease communities’ online fora to broaden my horizons. That’s how I came across ALSUntangled—an org likely to be of...
    Thread by: jonathan_h, Jan 26, 2024, 6 replies, in forum: Advocacy Projects and Campaigns
  9. jonathan_h
    Post

    Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al

    With the press consistently framing this study as proof exercise is harmful for people experiencing PEM, it wouldn’t surprise me if our friends in...
    Post by: jonathan_h, Jan 4, 2024 in forum: Long Covid research
  10. jonathan_h
    Post

    New relapse of ME after 15 years

    A few months where, from what I remember, they’d happen around 2-3 nights per week
    Post by: jonathan_h, Nov 17, 2023 in forum: Neurological/cognitive/vision
  11. jonathan_h
    Post

    New relapse of ME after 15 years

    I’m very sorry about your relapse. I don’t have treatment suggestions, but I wanted to add that I’ve also experienced myoclonic jerks like what...
    Post by: jonathan_h, Nov 17, 2023 in forum: Neurological/cognitive/vision
  12. jonathan_h
    Thread

    The idea that ME subtypes explain treatments only working for some—thoughts?

    Whether it’s Ampligen, LDN, or CoQ10, it’s not uncommon to see pwME attribute the range of outcomes from popular treatments to (theoretical)...
    Thread by: jonathan_h, Nov 3, 2023, 18 replies, in forum: General ME/CFS discussion
  13. jonathan_h
    Post

    New Long Covid non-profit 501(c)(3) org registered: Long COVID Foundation (LCF)

    Exactly. For context, the Twitter user in this screenshot is the main person behind this org. They frequently say disparaging and ignorant things...
    Post by: jonathan_h, Oct 29, 2023 in forum: Long Covid news
  14. jonathan_h
    Post

    When Dying Patients Want Unproven Drugs

    Merged thread A few months ago, the New Yorker published a piece about ALS—specifically, about the debate among patients and regulators over...
    Post by: jonathan_h, Oct 23, 2023 in forum: Other health news and research
  15. jonathan_h
    Post

    “Your Blood is Black”: My ME/CFS Experience with HELP Apheresis in Germany

    This is more a comment about Cort than the plausibility of apheresis specifically, but I wonder how much money has been cumulatively wasted on...
    Post by: jonathan_h, Sep 27, 2023 in forum: General ME/CFS news
  16. jonathan_h
    Post

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

    I see this tweet as making these problematic claims: You don’t know what’s best for yourself. Baseline-raising ME/CFS treatment exists for...
    Post by: jonathan_h, Sep 11, 2023 in forum: ME/CFS research news
  17. jonathan_h
    Post

    What can I do to treat covid-19 infection?

    I second EndME’s recommendation for a PCR test and Paxlovid and also recommend this website:...
    Post by: jonathan_h, Sep 7, 2023 in forum: Infections: Lyme, Candida, EBV ...
  18. jonathan_h
    Post

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

    The view I’ve come to over the years regarding ME research and treatment anecdotes, not through any special Truth Knowing process but just me...
    Post by: jonathan_h, Sep 4, 2023 in forum: ME/CFS research news
  19. jonathan_h
    Post

    Moving from laptop/computer to iPad/tablet - did it help?

    I’m sorry to hear about your worsening health. I bought an iPad to replace my laptop when my illness became severe enough where using one was...
    Post by: jonathan_h, Sep 3, 2023 in forum: Home adaptations, mobility and personal care
  20. jonathan_h
    Post

    UK Times and Independent on ME misdiagnosed as Lyme disease, August 2023

    I believe Lyme misdiagnosis and mistreatment is an under-appreciated, urgent problem for the global ME/CFS community. My impression, informed in...
    Post by: jonathan_h, Aug 30, 2023 in forum: General ME/CFS news
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