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  1. Lilas

    News from Canada

    Good article (French, Radio-Canada) concerning the repercussions of Long Covid and denouncing the difficulty of having access to a basic disability pension in Quebec (RRQ). It includes several testimonials from pwLC, EM is mentioned and Prof. Simon Décary is interviewed. The fact that there is...
  2. Lilas

    News from Canada

    From the previous article, the Canadian Government is investing 20 million for research on Post-Covid Conditions (PCC) and 9 million to develop Clinical Practice Guidelines. I have some concerns, because although I don't know these 2 scientists, Dr. Holger Schünemann and Dr. Robby Nieuwlaat...
  3. Lilas

    Times: NHS plan to help millions stop using antidepressants and painkillers

    I don't live in the UK, but I find that the article highlights legitimate concern caused by this policy... This is such a sensitive topic but one that needs to be addressed frankly, and can only be handled with professionalism and real empathy, compassion on the part of physicians. Because the...
  4. Lilas

    Gait in ME/CFS

    (I take walks regularly. Don't get me wrong though, these are slow walks, and despite being dizzy, exhausted, in pain. On those days, it's the only activity I do because then " total rest " becomes mandatory.) So, once in winter, I suddenly noticed my footprints left in the fresh snow and was...
  5. Lilas

    The pain psychologist Rachel Zoffness expains why pain is a “biopsychosocial phenomenon“…. Ezra Klein, New York Times columnist

    Just pure BPS (as we are too used to hearing... sigh ! ), affirming without complex and with great conviction that she holds THE recipe for curing all chronic pain... And what is this magic recipe ? Simple, a CBT-flavored desensitization of this CNS that sends too many pain signals for no...
  6. Lilas

    Poll - In your opinion, is it worth experimenting with therapeutics of unknown efficacy?

    In my case, if there's one thing I learned pretty quickly and the hard way, it's that my poor ME body doesn't like big changes... as if it was easily unbalanced. Regularity and discipline are essential companions for me. Let me explain. At the start of ME, I had to try about twenty medications...
  7. Lilas

    Jejunal feeding: when is it the right thing to do?, Paine et al, 2020

    I don't understand. The authors are all from UK, don't they have an "obligation" to follow NICE recommendations at least regarding ME ?? We all know that these kinds of beliefs projected onto the patient can become very dangerous in certain situations and lead to outright cruelty...
  8. Lilas

    News from Canada

    Here is an article on Long Covid appeared in the Châteauguay newspaper (Quebec) Link . It talks about the first research and care project for patients which inspired the opening of several other Long Covid Clinics later by the provincial government. The initial project was carried out in...
  9. Lilas

    The Rise and Fall of Peer Review, 2022, Mastroianni

    Absolutely, @Jonathan Edwards, I should have specified "among other things". I was only talking about the statistical aspect but in my mind I did not exclude other weaknesses... including the one you mentioned in the thread of this study. Moreover, I am in no way in a position to contradict the...
  10. Lilas

    The Rise and Fall of Peer Review, 2022, Mastroianni

    Sorry to make a little diversion... Thank you very much @oldtimer ! My 2 statistics math classes go back several decades and this Dr explains wonderfully well why the conclusion of this article is outrageously distorted.
  11. Lilas

    Phantoms in the Brain - BBC radio programme on 'Functional Neurological Disorder'

    Well, this "ambiguity" is the essence of their nonsense ! But how can they not feel embarrassed saying such incoherent things !! This is the height of absurdity and incompetence... I can't believe smart, sane people will swallow this.
  12. Lilas

    Blog: The Science Bit by Brian Hughes

    Good God, it feels good to hear someone (and especially a psychology professor !) who truly understands, describes so well the reality that pwme(s) has been enduring for decades !! He clearly and simply outlines the reasons for the skepticism and stigmatization we experience from doctors and...
  13. Lilas

    Healthy Debate: Groundbreaking research into ME/CFS a pandemic ‘silver lining’

    Not quite true. I was diagnosed in 2009 and my doctor (and the others later) never urged me on any treatment such as GET and/or CBT. In fact, in my Province at the time, the President of Collège des médecins du Québec (CMQ) affirmed that the latter was in full agreement with the Canadian...
  14. Lilas

    The Feasibility and Impact of Practising Online Forest Bathing to Improve Anxiety, Rumination, Social Connection and Long-COVID Symptoms: 2022 McEwan

    More ordinary than you imagine...and childish. Honestly, I don't need anyone to help me contemplate nature !!
  15. Lilas

    News from Canada

    The College of Physicians of Quebec (CMQ) has published some informations about ME on its Facebook page. Since I'm not a FB member, I don't have access to all comments. It's certainly not perfect: boldface "chronic fatigue" instead of chronic fatigue syndrome, don't mention PEM. :facepalm: There...
  16. Lilas

    Mindfulness Meditation Interventions for Long COVID: Biobehavioral Gene Expression and Neuroimmune Functioning (2022) Porter & Jason

    ... and méditate with cognitive problems ?! :confused: Simply impossible. Before ME, I "meditated" in my own way from time to time, but since ME, I can only do it for 30 seconds. max.! Now, I only find rest in silence, lying down and letting my mind wander freely, that's all. "Mediation...
  17. Lilas

    Covid-19 vaccination experiences

    Just to testify that I received the bivalent covid vaccine on Wednesday. I was able to choose the one from Pfizer. The side effects were thankfully minimal and like all my previous doses of this company. Swollen injection site area and arm muscle pain. 48 hours later, only slight swelling...
  18. Lilas

    Crowdfunding: Trial By Error [David Tuller]: Reporting on ME, ME/CFS, long Covid, and "Medically Unexplained Symptoms", Oct 2022

    Yesterday, I made my second donation.:) All donations count, even the smallest ones !
  19. Lilas

    Fatigue as the unconscious refusal of the demands of late capitalism, 2021, Diserholt

    Faced with such fantastical rantings, I too am speechless, although not surprised. Like most who embrace psychoanalysis as a religion, she listens but doesn't really hear, she's only interested to see her beloved little theory corroborated, no matter if facts, reality, truth are evaded or...
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