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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. lilpink

    Question wrt use of rituximab

    Yes. I've already done that and only managed to get a pro forma sort of response.
  2. lilpink

    Question wrt use of rituximab

    I have very long standing ME. I developed overt SFPN in 2011 after swine flu (positive punch biopsy). Presentation is severe neuro pain all over my skin (allodynia) and very strange reactions to almost everything in the environment such that I'm now running out of the things I need to survive...
  3. lilpink

    Dr David Tuller: My Letter About MUS to The Journal of General Practice 6th May 2019

    It’s important for those not in the UK to understand the significance of this blog and how MUS fits with the long history of ME and CFS patients being neglected. MUS is a product of the same group of psychiatrists and psychologists in the UK, the Oxford / ‘Wessely School’ / BPS cabal, including...
  4. lilpink

    Jarred Younger does a webinar with more updates

    Has it been uploaded to You Tube I wonder? I can more easily cope with it via that portal as I can access via TV and thus be horizontal etc and so on...
  5. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    No. This is 'my' second petition. I get the sense you are trying to create an argument based on nothing.
  6. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    The information on the Petition isn't very long at all, especially compared to many other petitions that have been created for ME advocacy. The OMEGA petition had a great deal more information attached to it if you include numerous updates and I don't remember anyone ever criticising it on that...
  7. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    I think you overestimate patient engagement and underestimate patient fatigue when it comes to signing petitions ad nauseam. I agree with @Nielk that this is a very concise petition. Providing the correct information to the prospective signee and the intended final recipients.
  8. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    I find it hard to take anything away from this other than ICC are preferable, which should result in a desire to sign the petition? :thumbdown:
  9. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    It's difficult to disagree with that.
  10. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    It's doing everso well isn't it? It seems to have hit a nerve and resonated with a huge number of patients whose voice has hitherto remained silent. It has been assumed that those who oppose the IOM/SEID construct and voice those objections are a minority of 'radicals' but this petition is...
  11. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    French Translation of the petition. https://relatingtome.net/french-translation-of-pwme4icc-petition-to-hhs-for-recognition-of-me-as-per-icc/
  12. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Thank you. Please feel free to share too :)
  13. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

  14. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    For those on FB this might be helpful too : https://www.facebook.com/photo.php?fbid=10211868118207566&set=a.3943415833032.2134645.1509075311&type=3&theater
  15. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    The question might be simple but sometimes the answers take longer to explain and I appreciate that you're not well enough to read much. Neither am I, so this might be 'doable' if you read it in small chunks. I have permission from the writer to share publicly. " New Norwegian Study Suggests...
  16. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Maybe this can help? http://www.mdpi.com/2075-4418/5/2/272/htm
  17. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    I think David Tuller's latest blog http://www.virology.ws/2018/07/30/trial-by-error-the-cdcs-update-for-healthcare-providers/) (simply explains the issue when he says: ""In a study, you want to ensure that you have as homogeneous a population as possible so that you know you are studying the...
  18. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    I'm sure @Nielk will add something. As the person who has posted this here I, personally, feel it's imperative for ME to be defined very precisely not just for the benefit of people with ME but also for those who might stand outside that category and with every hope that just as much effort...
  19. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Petition update: https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now/u/23073066
  20. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Thank you, much obliged. I'm a bit clunky wrt to knowing quite where I should lodge posts in the first instance.
  21. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    The petition is now also available in Dutch https://mecentraal.wordpress.com/2018/07/28/wereldwijde-oproep-aan-de-amerikaanse-gezondheidsinstellingen-erken-me-conform-de-icc/
  22. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Only 29 off the 1500 mark. Quite a significant number of people feel strongly against the 'status quo' we seem to have been delivered.
  23. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    Thus far 1079 people have signed the petition. That is no mean 'number'.
  24. lilpink

    #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

    #PwME4ICC https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now A very important petition which I think everyone with ME will want to sign.
  25. lilpink

    IAPT under the microscope David F Marks Published July 14, 2018 Editorial JHP

    It's not just the UK that needs to worry about MUS and IAPT initiatives. Allan Abbass seems to have connections with the 'Tavistock' (Tavistock and Portman NHS Foundation Trust) that promotes MUS and IAPT in the UK -...
  26. lilpink

    IAPT under the microscope David F Marks Published July 14, 2018 Editorial JHP

    Here is a respected journal with an Editorial which appears highly critical of IAPT that is inviting open debate about the programme. This is a significant moment and we should not look this gift horse in the mouth.
  27. lilpink

    IAPT under the microscope David F Marks Published July 14, 2018 Editorial JHP

    Hopefully this is the beginning of a conversation which should extend to properly examining IAPT and how detrimental it might be to people with LTCs such as those with ME. As Marks says: "The recent expansion to LTC and MUS is causing experts and patients concerns about the diagnostic coding...
  28. lilpink

    IAPT under the microscope David F Marks Published July 14, 2018 Editorial JHP

    http://journals.sagepub.com/doi/full/10.1177/1359105318781872#articleShareContainer
  29. lilpink

    A ME patient reports how she was treated by Prof. Michael Sharpe

    I hear this has been shared from a private FB post without permission? If this is so it should be removed now. This is a public forum.
  30. lilpink

    A ME patient reports how she was treated by Prof. Michael Sharpe

    It seems the crack in dam has widened to a considerable fissure. This together with Emma Reinhold's and 'Robin's' tweets illustrate that when one person talks it paves the way for others to do so too. The description of the treatment at the head of this thread is no surprise to anyone with ME...