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  1. Peter

    Norway: Opinion piece by prof. Saugstad: Give ME patients help that works

    Yes, Saugstad have done a lot, trying to educate by balanced information. As we know, that is quite a challenge. I agree with you a 100% on strategy, above all trying to avoiding polarization, not inviting to recycling for the billionth time, but given the history and climate, that is probably...
  2. Peter

    How chronic fatigue syndrome, also called ME/CFS, left Tony Wallace a shell of his former self - ABC News (Australian Broadcasting Corporation)

    Yes, would be interesting to know more about that. Specialist in chronic fatigue? Hmmm. Are we dealing with a classic aftermath of LP or something similar? Suddenly starting pushing and collapsing? All together, I think the article quite well capture the many losses and desperate struggle that...
  3. Peter

    How chronic fatigue syndrome, also called ME/CFS, left Tony Wallace a shell of his former self - ABC News (Australian Broadcasting Corporation)

    Yep, I agree. There are bits and pieces that always can be better/clearer in an article like this, but yeah captured my own “journey“ quite good, to. But made big eyes when reading the very first sentence: “A mysterious illness with few symptoms”...? That is completely wrong. If there is only...
  4. Peter

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

    A no-nonsense thing of beauty. Brilliant overview. But the “CFS” term has no pros to it whatsoever, even in the broadest and most philosophical view.
  5. Peter

    Sweden - RME news

    Watched the start of the conference. Mehlsen seems like a compassionate and sensible guy. Being critical to vaccines and highlighting possible side-effects, will always be controversial, but I thought doctor Mehlsen gave a good impression. Must be nice for our danish friends to have this doctor...
  6. Peter

    Work Rehabilitation and Medical Retirement for [ME/CFS] Patients. A Review and Appraisal of Diagnostic Strategies, 2019, Vink et al

    Not read the paper yet, but looking forward to it. Just a glimpse so far, and it is so important to address this. The fact is we’re no way near a cure. That is in every case a lot to ask. What we, after all these years could label a reasonable expectation from a patient perspective, are soothing...
  7. Peter

    News from Scandinavia

    This Bragee center or clinic seems like a major setback, yes. Thought Sweden was kind of improving and getting there, but..? This Stora Sköndal, just to actually have a special clinic at all, is something many other countries envy. Then you have the likes of Bergquist working around the clock...
  8. Peter

    Maureen Hanson talk at OMF Symposium 2019

    This resonates well with my personal experience and probably for a possible subgroup of patients. It can be quite hard to sort out what is what, and you can easily be fooled. Some years ago I also thought that I was picking up whatever got around of viruses. But by time and experience, I assume...
  9. Peter

    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Great letters. Reassuring that Tuller and others keep a close eye on this very important matter. From a academic point of view it is vital focusing on the important formal process needed in order to secure that studies are as little biased as possible, the process of registration and protocol...
  10. Peter

    ME/CFS success story: Lightning Process on Youtube 2019

    Been there, done that. Have the very same experiences as described here. What LP meant in the real practical world, was a severe setback short term, and LP also contributed significantly ruining long term prognosis. It’s chilling to read testimonies. The feeling of a cult, the language and the...
  11. Peter

    ME Association magazine summer 2019

    Thought this was interesting to see in written. Though it’s not a proof or anything, ref what do we know/speculation and so on, I think it is important to stress the possible danger of push-crash in relation to patient experiences, development of disease and prognosis. Intuitively it makes...
  12. Peter

    ME Association magazine summer 2019

    Read the piece. Overall quite ok. It’s an anecdote and very personal, but principles seems familiar for many. I think many (most) patients in relative terms are doing exactly what Neil wants them to do. Then I do think there are very few patients thinking that total bedrest forever will cure ME...
  13. Peter

    News from Scandinavia

    Yes, unfortunately nothing means what it used to. Words are bent and losing they’re intended meaning in the name of oversimplification. The recovery model is a gigantic piece of crap. Patient X used to play tennis on a regular basis for 2 hours hard, feeling good, getting all the health...
  14. Peter

    News from Scandinavia

    It’s quoted and translated above as; Otherwise our own clinical experience show that most recover, but this can in no way be quantified. Then the discussion of “quantified”, “put a number on”, “measuring” and so on. So she says that most patients recover, but they have absolutely no...
  15. Peter

    News from Scandinavia

    Shit. From outside we can’t know for sure if the numbers referred are the only reason for stopping the patient from getting the necessary help he or she might be entitled to, but have no reason to believe anything else. This perfectly illustrates the importance of accurate information in an...
  16. Peter

    Clinical symptoms and markers of disease mechanisms in adolescent chronic fatigue following Epstein-Barr virus infection, 2019, Wyller et al

    It’s hard to find a more biased man than Wyller. Not responsive to anything but own hypothesis and theories, doing “science” the opposite way. Problem fixed is the starting point, then trying to fit the data. It’s a mess that no one really don’t understand. Then I agree with all import factors...
  17. Peter

    JAMA -"Advances in understanding the Pathophysiology of Chronic Fatigue Syndrome" by Anthony Komaroff

    I hope you’re wrong on the timeline, but unless appropriate funding I think your estimates are realistic. It’s not that much of a comfort to the ME community, but I do find the history of HIV/AIDS uplifting. From the devastation to today. From the start early 1980’s, when it was a death...
  18. Peter

    Trial By Error: Some Thoughts on MUS and Bermingham; My Letter to Professor Payne

    Very alarming. Brilliantly questioned, @dave30th. The mix of MUS, somatisation, now subtreshold levels of somatisation and the imprecise juggling of numbers are really scary. Then add the “magical” IAPT program.. Times are scary. Constructions no one actually do believe is true are made...
  19. Peter

    JAMA -"Advances in understanding the Pathophysiology of Chronic Fatigue Syndrome" by Anthony Komaroff

    Hehe. Like the frankness and your valuable sort of devils advocate perspective on different matters. Not referring to Komaroff in particular, but more in general, it clearly is a problem when overselling findings and results. To some extent that may also be a problem on the biomedical side also...
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