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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. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Questions: Chu - Cognitive v Physical Exertion - yes they need to be studied differently PEM v Relapse - Relapse is a reduction in function for a prolonged period Knight - PEM Delayed - what would you recommend? First trial in what they can do for this patient group Was a three...
  2. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Dr. Sarah Knight Cognitive Function in Adolescents with CFS/ME: A Novel Paradigm ME/CFS often thought of as an adult illness - also affects children How Common - Estimates vary widely - up to 2% Functional Impact - Is significant - occurs at a time of development - missed...
  3. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Lily Chu - Deconstructing Post-Exertional Malaise ORIGIN - term around for 50 years - arose from Ramsay - CDC used it in 19946 - Term is confusing - In 2000 - meeting What is the Evidence of PEM? - clinical experience and patient advocates - Clinical studies: valuable but limited...
  4. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    My Fault there - when I began the conference there wasn't a hashtag available - hence I try and put it into each posting here
  5. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Mark Van Ness - Heart Rate Variability PEM - looking at what occurs in the post-exertional state - Physical stress can give an insight into what occurs in the illness - activates immune system APPROACH - patients are encourage to come in refreshed and at their best - use a 2 day...
  6. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Questions Jason - CCC was designed to be clinical and became research That's the problem with SEID is that it was being designed for clinical but will inevitably be research criteria. - Needs an ongoing consultation about the criteria because like AIDS it will change over time. Doing a 4...
  7. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf John Kaiser - Pateint - CEO of Company doing Pharmaceutical - Researcher BIG PHARMA - feels that they need to be involved - Funding will go up by 50 to 100 times if they become involved - the lack of name and criteria is holding them back - they are risk averse and don't like...
  8. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Lucinda Bateman - Jason was someone she looked up to and was mentored by when she came into ME/CFS. They were astounded by the CDC Reeves study. The CFS-like people were astounding and indicating a public health issue that needed to be addressed. The IOM report is to improve...
  9. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    OK Jason is on this morning with a talk about Critieria. Major point on Fukuda - Sleep, Cognitive and PEM are the key criteria, but are not compulsory. They symtpoms therefore can be any of the 8 and hence dilutes the pool of patients with others. Pointed out that the prevalence of Mood...
  10. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Morning Guys ... Apologies for yesterday. My multitasking abilities abandoned me. Ultimately just had to take time out and listen and then rest.
  11. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    I would have to review the recording for this one ... I don't believe, from memory, that is what they were saying
  12. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Fluge expanded upon his latest study. Feels that there is a metabolic obstruction in the central energy pathway that causes a profound lack of energy. He notes that the gene expressions indicate the PDK enzymes increase in both males and females - however there is a different...
  13. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFEMEConf Just a recap of an advocacy session from last night: Barriers to Effective Advocacy · Fragmentation o Numerous small groups and individuals o Numerous different “asks” · Conflicting demands (who do external organisations deal with? They ignore all) · No strong national...
  14. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Fluge is again running through the rituximab study that he presented yesterday... if there is anything new, or if there is anything relevant from the questions, I will keep you informed.
  15. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Morning all ... We have just commenced the Professional part of the conference, with Fred Friedberg running through the purposes of the IACFSME, board membership, the fatigue journal and introducing the travel award winners. First speaker is Dr. Fluge
  16. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Workshop The Workshop moved into the question of what SHOULD happen? 1. Accessible clinical care 2. Good clinical care for diagnosis and treatment supported by research 3. Good access to disability supports 4. Social support, understanding and accommodations. The potential approach was...
  17. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Workshop: What happens NOW when someone has ME/CFS? 1. There is a lack of sense of community belonging because: - the public and institution are disbelieving; - their health needs are unmet - they have difficulty getting access to benefits (eg income support, medical benefits, accommodations...
  18. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    This workshop revealed an examination of the 2010 Canadian data collected on a number key indicators of progress towards treating and attending to the condition: * Reported Unmet Health Care Needs; * Very Weak Sense of Community Belongoing These two issues demonstrated that CFS and FM were the...
  19. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Workshop - Moving ME/CFS Forward Interantionally (Margaret Parlor and Mary Dimmock) This workshop examined two themes: 1. What happens NOW when someone has ME/CFS? 2. What SHOULD happen when someone has ME/CFS?
  20. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Workshop - regrettably I just lost the entire summary of the workshop .... Gotta love computers?
  21. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Olav Mella - Flections on the Rituximab Studies * are there other possibilities of immune issues in these patients? IMMUNE MANIPULATIONS * Not all Work * Gammaglobulin - helps some. Does it work on immune system or it it unrelated binding to receptors. * Plasmapheresis and...
  22. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Fluge: Is ME/CFS caused by an immunological pathomechanism? Outlines a number of supportive observations: * Patterns of responses and relapses after B-cell depletion * B-cell lymphoma risk * High frequency of autoimmunity in relatives * Genetic predisposition * Mainly females *...
  23. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Now moving onto Fluge: B-Lymphocyte depletion in CFS/ME. Presentation on their Rituximab trial. Funded by the Kavli Foundation and various Councils and Foundations * Started with a patient (with aggressive B-cell lymphoma) that had Rituximab and improved - had ME/CFS and had long lasting...
  24. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Dr. Peterson Running through various drugs studies such as: * Anakinra which is a recombinant human interlukin-1 receptor antagonist. * Rituximab * Low does Naltraxone * Hihg dose B 12 study at OMI * Fecal Microbiota Transplant - (problem is there is a need for repeat transplants)
  25. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Now moving onto Rituximab and Emerging Treatments. Dr. Dan Peterson is introducing the research, with Dr. Oystein Fluge and Dr. Olav Mella. Peterson says: * no proven effective treatment that is universally effective * ME/CFS patients hypersensitive to medications * Sart low and go slow; *...
  26. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Question has been asked. Why hasn't the extra $ 2 Billion extra grant benefited ME/CFS. Whittemore argues it has to a degree. Noted that it wasn't earmarked for anything specific. Also noted that at the time, NIH had just begun to "ramp up" their ME/CFS area hence it was just a timing...
  27. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    #IACFSMEConf Whittemore just gave two indications about foreign grants: 1. Mega Study in UK - Would look at discussions on this. Thinks its interesting. Have not discussed with an UK researchers as yet. 2. Grants - Foreign grant applications have an extra level of scrutiny to them. The...
  28. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Question has just been asked - Should the NIH apologise for the years of neglect? Whittmore will take that one back to Francis Collins to discuss. If there is to be an apology - Whittemore would be the one providing it. She regarded this as "an interesting question".
  29. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Hi Guys .... I am currently at the conference. We have just had an introduction from Fred Friedberg who has outlined the conference for the next four days, and particularly to speakers and workshops for today. Currently listening to Vicky Whittemore from the NIH who has provided an extensive...
  30. Geoffrey Hallmann

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    All Good Sasha - I am going to be attempting to do that throughout the day.