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  1. Hoopoe

    CAN LINGUISTIC ANALYSIS BE USED TO IDENTIFY WHETHER ADOLESCENTS WITH A CHRONIC ILLNESS ARE DEPRESSED? - Jones, Loades, Crawley et al Dec 15 2019

    Once you read Freud, you know where these ideas that patients cannot tell they have a psychological problem come from.
  2. Hoopoe

    Reflections on advocacy

    Finding a biomarker would be helpful and beneficial for general credibility and attractiveness of the illness to researchers and the pharmaceutical industry, as well as probably unlocking higher funding. But maybe we don't need a biomarker to gain the credibility that we need. If you think about...
  3. Hoopoe

    Reflections on advocacy

    I think ME/CFS advocacy is beginning to bear fruit and is growing all over the world which is exciting. The results so far are underwhelming. We should not be content with what we have achieved but aim much higher. The poor results are in part I think because research and societal change take...
  4. Hoopoe

    ..Understanding the Role of Psychological Processes in Disease Development, Maintenance, and Treatment: The 3P-Disease Model, 2019, Wright et al

    The recipe is: Begin by saying that all factors influence illness, which is hard to disagree with but also vague and can mean anything. Then claim that psych factors are causally important in some disease and draw an exiting diagram showing how. This can seem persuasive until you ask yourself...
  5. Hoopoe

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    He didn't say what the metabolic problem they found was. They are going to publish. Probably not a real breakthrough I suspect. And I'm guessing it's related to fatty acids and carnitine.
  6. Hoopoe

    Review: Astaxanthin: A Potential Mitochondrial-Targeted Antioxidant Treatment in Diseases and with Aging, 2019, Sztretye et al

    Have you considered creating a new therapy, the Cheesecake Process? I think it will be a fantastic and delicious success. Very high scores on cake satisfaction questionnaires.
  7. Hoopoe

    Statnews - BMJ should retract flawed research paper on chronic fatigue syndrome -STAT - David Tuller Dec 2019

    We are also now equipped to reach our own conclusions about the integrity of the BMJ.
  8. Hoopoe

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    He also said on the topic of herpesviruses, that some clinics have a lot more of these cases than others. My thoughts follow: Presumably due to regional differences and what I think is called referral patterns. Anyway according to the data presented herpes viruses appear to be a problem for...
  9. Hoopoe

    USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center, Lipkin

    Recently the Lipkin team completed a proteomics pilot study. Small study, but well matched patients from multiple sites. They found increase or decrease of particular proteins was associated with ME/CFS. They think ME/CFS may be a final state reachable through multiple different paths (as for...
  10. Hoopoe

    Norway - CFS/ME Research Conference Nov. 25th-26th 2019

    Maybe PEM is caused by cellular (metabolic?) stress signals that are accumulating faster than they can be removed in response to increased activity.
  11. Hoopoe

    Statnews - BMJ should retract flawed research paper on chronic fatigue syndrome -STAT - David Tuller Dec 2019

    I am almost sorry for Vogt. Actually no, he deserves everything. I am thinking that the department he trained in must be a crazy quackfest of incompetents thinking they are harnessing the power of the mind to cure devastating illness.
  12. Hoopoe

    (ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

    This is probably because of Strand being an author. I will try to communicate with EUROMENE on this, as I think it's unacceptable to allow someone to promote controversial treatments based on junk science.
  13. Hoopoe

    News from NIH: ME/CFS Webinar - October 17, 2019

    If I remember right, these patients were "well diagnosed" by ME experts.
  14. Hoopoe

    Norway - CFS/ME Research Conference Nov. 25th-26th 2019

    Interesting. The Norwegians are trying to find the blood factors that are affecting/causing the cellullar dysfunction. They list the following candidate molecules: FGF-21 GDF-15 C-Peptide GDF-15 just came up in another study by the UK Biobank. FGF-21 is another stress hormone involved in...
  15. Hoopoe

    ME/CFS patients exhibit altered T cell metabolism and cytokine associations (2019) Mandarano, Hanson et al

    I suspect the so far few responses to this are due to this being a very technical paper, packed with information and findings.
  16. Hoopoe

    Conceptualising illness and disease: reflections on Sharpe and Greco (2019) Wilshire and Ward

    What Sharpe et al have done is proposing a solution and then creating an illness model (a narrative) that logically leads back to the solution. The illness model just doesn't fit reality, but you can always accuse critics of dualistic thinking for finding all this hard to believe.
  17. Hoopoe

    Conceptualising illness and disease: reflections on Sharpe and Greco (2019) Wilshire and Ward

    Several components of the CBT/GET model fail at this first step. Deconditioning is not present in the beginning in many cases, and even later on a substantial portion of cases don't differ in their fitness level from healthy sedentary controls. Relevant illness beliefs seem to typically form...
  18. Hoopoe

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    This seems relevant to the last few posts (from reddit) I think observing the normal function during an emergency (or more generally when the patient really wants it) has led some people to believe that there is no real problem, presumably because they don't see what happens afterwards.
  19. Hoopoe

    Trial By Error: Professor Jonathan Edwards’ View of ME (includes discussion of exercise and long-term harm)

    The mechanism will be one that leads to patients engaging in energy conservation behaviour, also known as pacing or perhaps "being lazy and unmotivated". I think I can sort of distinguish at least two kinds of fatigue, one that follows exertion, while the other is something that I can wake up...
  20. Hoopoe

    Severity classes in adults with hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders: a pilot study ..., 2019, Copetti et al.

    There are so many people with horrible syndromes nobody can really explain and that is why I think that we should collaborate more with other patient groups, maybe even work towards building research initiatives whose job is to discover the cause of these syndromes. Something like hEDS and...
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