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

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Search results

  1. Nielk

    How carnivore diet relates to treatment

    Very interesting, @Eastman. I’m going to look into it. Thank you.
  2. Nielk

    How carnivore diet relates to treatment

    Thanks, @cigana and @Jadzhia for your replies. I hear you you about histamine. In my case though, it seems to act as a therapeutic. I could be in the midst of a severe headache, eat some meat and a few minutes later - my headache is gone for a couple of hours.. Nothing else, except strong...
  3. Nielk

    How carnivore diet relates to treatment

    I have been suffering from severe headaches for years now. I tried basically everything I could to treat them with little positive results. Lately, I noticed that after eating meat, my headache lifts for a short period of time. I started the Carnivore diet a few weeks ago. I am only eating...
  4. Nielk

    Truth about Vaccines docu-series

    Thank you @Wally for sharing theses links to Dr. Mikovitz trailer for the Plandemic documentary and to her many interviews. I will want to go through them. I understand that her new book “Plague of Corruption” is #1 on Amazon. Very interesting.
  5. Nielk

    ME Activists Meet with HHS - Calls to Action

    ME ACTIVISTS MEET WITH HHS - CALLS TO ACTION On July 8, 2019, activist Eileen Holderman and Gabby Klein, met in Washington, DC with a Senior Advisor of the Office of Intergovernmental and External Affairs of the Department of Health and Human Services (HHS) to discuss the requests in the Open...
  6. Nielk

    Open Letter to Secretary Azar and Calls to Action

    Please read more here
  7. Nielk

    brian nicholson detained in psyschiatric unit with me cfs for 3 years

    Leonard Jason did a study in 2008 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/).
  8. Nielk

    CALL TO ACTION! NICE ARE BETRAYING US!

    In actuality, The panel that was originally introduced by the IOM is the exact panel they went ahead with. The suggested panelists from Spotila blog: http://www.occupycfs.com/2013/12/03/iom-panel-announced/?fbclid=IwAR24zJWVArEzj0Pb-5RumKm0tyHnUDa1_3G6w1WTOF8IymdG0mRy_0f0SuY ME/CFS Experts* (7...
  9. Nielk

    MEADVOCACY’S COMMENTS REJECTING PROPOSED ICD-10-CM CHANGES

    Read entire blog here -
  10. Nielk

    Exposing the Deception: SEID is not ME!

    Read entire blog here -
  11. Nielk

    Eileen Holderman’s latest Twitter storm 23 Sep 2018

    Good question by advocate Eileen Holderman on twitter.
  12. Nielk

    Eileen Holderman’s latest Twitter storm 23 Sep 2018

    Here is a link to information on this proposed change to US ICD-10-CM which has been approved by Dr. Lily Chu of the IACFS/ME org. https://relatingtome.net/nchs-cdc-proposal-for-icd-10-cm/
  13. Nielk

    In Memory of Purple (Klara)

    I'm so sad to hear about Klara's passing! My condolences to her family. a few years ago, Klara and I collaborated on a project to create images to raise awareness for ME. It was such a pleasure to work with such a dedicated advocate. I appreciated Klara's many talents and her great sense of...
  14. Nielk

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

    Thanks, @Wally. We would appreciate any additional translations from volunteers. I can be reached here or as a pm.
  15. Nielk

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

    Please help us reach 3,500 signatures on the #PwME4ICC petition to HHS for recognition of ME as per the ICC. We are almost there. 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 Dutch...
  16. Nielk

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

    A volunteer has graciously provided an Italian translation of the petition - https://relatingtome.net/italian-translation-of-pwme-petition-to-hhs-for-recognition-of-me-as-per-icc/
  17. Nielk

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

    Of course, there will be opposition. HHS refused their federal advisory committee (CFSAC) 2012 recommendation to work on criteria starting with the CCC. HHS refused the letter from 50 ME experts telling Secretary Sebelius to cancel the IOM contract and to adopt the CCC criteria as they all...
  18. Nielk

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

    Here is an easy to follow questionnaire provided by MEadvocacy.org to see if you fit the ICC criteria - https://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria
  19. Nielk

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

    This is exactly correct, The ICC provides for 'atypical ME' for those who fit PENE and 5, instead of 7, additional symptoms. The IOM criteria do not have stated provisions for those who do not match all their stated symptoms. For example, I have heard from people with ME who do not suffer...
  20. Nielk

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

    It's not the reports that are in question, it's the resulting criteria which when flawed will adversely affect ME patients, as they have done for the past decades.
  21. Nielk

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

    The ICC was created for diagnostic and research purposes - the reason being that the many ME experts who authored the ICC knew from past experience that the original aim of criteria gets blurred. Past CDC definitions for "CFS" or "ME/CFS" when directed for research, were actually used for both...
  22. Nielk

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

    In its first week, the petition from #PwME4ICC has reached 3,068 signatures! Thank you to all who participated in signing and sharing this important message to HHS. We now have a Spanish translation of the petition -...
  23. Nielk

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

    Here is a chart comparing the IOM criteria to the ICC criteria. https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/22/attachments/original/1531592663/ICC_compared_to_IOM.pdf?1531592663
  24. Nielk

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

    Here is a German translation of the petition - https://relatingtome.net/german-translation-of-pwme4icc-petition-to-hhs-for-recognition-of-me-as-per-icc/ and a Dutch translation -...
  25. Nielk

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

    There is no strength in numbers if the majority of people are misdiagnosed with the disease and actually suffer from some other illness for which they are not receiving the accurate care and treatment for their illness.
  26. Nielk

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

    We believe that ME and CFS are not the same nor interchangeable. The IOM Report authors have stated the same as well. They do have some overlapping symptoms but so do many illnesses. For example, fibromyalgia has common symptoms with ME as well but it's considered a separate disease - even...
  27. Nielk

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

    Yes, Wally. It's a good idea and we will be doing that. I believe this is the oversight committee? https://energycommerce.house.gov/subcommittee/health/
  28. Nielk

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

    PETITION UPDATE Your voices are being heard! Thanks to you, the petition has reached over 600 signatures in just one day. HHS has been notified of this petition to them. Let’s put our efforts together to raise awareness of the issue of recognition for ME as defined by ICC. Please continue to...
  29. Nielk

    Emperor CDC’s New Clothes

    Entire blog here - https://relatingtome.net/2018/07/18/emperor-cdcs-new-clothes/