• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. U

    PR Collapse

    :sluggish::nerd::thumbsup::cake::cookie::trophy::angel::balloons::ill:
  2. U

    PR Collapse

    Thats what I see
  3. U

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    But I couldn't a while ago. I notice my name is now first in the group owner list
  4. U

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    I can see a delete group option in the group controls
  5. U

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    I'm happy for her to come back I've tried to save and delete a lot of the older threads. I think we should set a deadline of a few days and then delete the entire group.
  6. U

    Can UK based school legally require me to see their doctor to get extra time on exams?

    It is still worth asking the tymes trust as they may know or they may know who to ask.
  7. U

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    I've got the name s4me.info at the moment as it was cheep but I think the forum needs to decide what it wants to be called. Currently there is only the default web page for the webserver
  8. U

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    I did think that PR could be saved. Part of the reason for talking about moving elsewhere was to try and worry the board. They are basically shutting up the difficult characters. Short of taking control of the servers I don't see how we deal with this, Anyway I am going to set up a new server...
  9. U

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    I'm now being moderated so I don't think I will be visiting here much again. I think we will have a new forum up soon. I've been testing stuff on a spare laptop and I'm planning to rent a server tomorrow,
  10. U

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    Seemed ok to me but didn't have time to do more last night. I will probably look again tonight/tomorrow
  11. U

    Rethinking childhood adversity in chronic fatigue syndrome

    I think what this paper seems to be doing (but I've not read it) is attributing depression to childhood adversity. What I can believe is the case (in the UK) is childhood adversity reflects being able to cope with chronic illness. I say in the UK because I suspect childhood adversity may relate...
  12. U

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    I've been manually going through each page and saving it. Which is a very slow way. I don't think PR will go away though. Sean used some software tool when he did RAG but don't know what. I did play with WebZip but wasn't convinced it was capturing everything.
  13. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    The reviewer may have said that but psychiatry does have quite a lot of drug trials I believe which would be double bind. The issue is with the groups who study CBT and other similar talking/lifestyle therapies. There is a concept of cognitive dissonance where people have conflicting beliefs...
  14. U

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    Rag 1 has gone so I've been archiving and deleting OA at least up to sasha and sid leaving.
  15. U

    Rethinking childhood adversity in chronic fatigue syndrome

    The problem is retrospective childhood adversity studies are unreliable because people can look back and find things if they try. Many people have childhood adversity and are not ill.
  16. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    If people were not responding they sent out a smaller set of questionnaires and then phoned and got answers to the SF36-pf and possibly one or two others. So the imbalance may indicate the level of chasing up.
  17. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    So what I was meaning is that the school attendance data quoted appears to be self reported given the numbers being quoted. But in their statistical analysis plan they specified that they had permission to collect this from the schools. Hence all the data (or most if people left school) should...
  18. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Its worth reading the questionnaire. On this link questions 3 to 12 form the physical function subscale. The UK version will have slightly different wording https://www.rand.org/health/surveys_tools/mos/36-item-short-form/survey-instrument.html But the thing is that it is self reported so...
  19. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    There is an issue with the figures quoted in the paper in that they seem to be self reports from people who chose to report rather that figures from the school that they say they had permission to collect in the statistical analysis plan,
  20. U

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    Yes probably being threads deleted as I save and delete. That happens when threads are created for me.
  21. U

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    I'm archiving and deleting some of the older threads because Sid and Sasha are very keen for that to happen
  22. U

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    Sean did the archive before
  23. U

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    Looks like PR is not in good shape. Sasha has raised concerns about this group containing private information and thinks we should archive and delete. She is concerned about new mods etc What do people think?
  24. U

    Predators and scammers

    One of the problems is that when someone improves or in rare cases recovers (or improves a lot) they attribute the latest thing they tried. This is why well designed clinical trials are necessary. I expect there is another issue which is when someone feels a bit better they feel well enough to...
  25. U

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    Of course its not up to children to design the experiment although I wonder if they were set the task along with some basic background in how to run a trial then they would have done better. The thing about biological measures is interesting because Crawley makes various assertions in the press...
  26. U

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    The complex thing about a recovery definition is in defining recovery vs remission. As in is this something that will come back and if so should people be doing stuff to avoid it. I think remission is probably a better term than recovery.
  27. U

    Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

    I did wonder if someone could do a survey of patients (perhaps physicians and healthy people) using the sf36 questionnaire to see what abilities on the scale would correspond to 'recovered', 'healthy' etc. The EQ5d scoring is based on a utility function derived from surveys of healthy people...
  28. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    i think @JohntheJack has asked for data. I think one of the things that is needed is the school reported absence figures. But I don't think any stats they have/haven't done are the issue here. The whole thing is the subjective measures are meaningless when LP tries to get people to think about...
  29. U

    Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

    Its also worth saying that for people who are tax payers in the UK they are doing gift aid which increases the amount of the donation.
  30. U

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    My assumption would be those in the LP group who didn't do LP were filtered out as not suitable since they seem to have some sort of process to filter those who are unlikely to be believers. If this is the case then it is right to keep that group together.