thegodofpleasure
Player in a Greek Tragedy
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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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@necessary8 -- as it says earlier in the thread, #MEAction put the summary here: http://www.meaction.net/wp-content/uploads/2015/05/ME2FCFS-RESEARCH-SUMMARY-Jamie-Seltzer.pdf
It does have links, so I'm not sure what you're referencing!
There is more that should be done. The #MEAction one is a condensed summary of what I did, so I think I should divide the sections up by body system and post them separately; that isn't done yet.
the random peptide immunosignature study by Lombardi, and the cerebrospinal fluid proteomics by Bregquist.
This is the main problem i generally see with those lists - they get outdated, and then you have to look for a new one. We really should have a list that gets dynamically updated
If maintaining it wouldnt be too much of a burden for you, having a full list along with the compressed one, would be amazing too.I ended up going through hundreds of references and cited 80+. When #MEAction suggested a summary doc I thought there was no way I could pare it down, but I ended up reducing the length of the 30+ pp doc to about 3 pp.
You mean my "ponderings on purinergic signaling" thing? It's a bit of a different format, I don't really intend on editing it in the future, instead I will post continuations. I've already posted Part 2If your ideas aren't in one doc (they probably are!) you should do it, too. I was very busy when you made your initial posts, but in my superficial skim they looked promising.
I post my updates here: https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o and the items highlighted in green are the most recent additions to the list
It's a bit of a different format, I don't really intend on editing it in the future, instead I will post continuations.
This is very interesting. I have dry and red eyes for several years now and it only occurred recently to me that it might be part of CFS. It always got worse with Vitamin D and/or calcium supplements over several weeks, so I suspect there might be connection as well.
The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings. In addition to the IOM report, the “General Information” section might mention the ICC considering that it defines ME as a complex disease involving profound dysregulation of the central nervous system and immune system, as well as dysfunction of cellular energy metabolism:There is more that should be done. The #MEAction one is a condensed summary of what I did, so I think I should divide the sections up by body system and post them separately; that isn't done yet.
The ICC has four criteria:Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1–3] and immune system [4–8], dysfunction of cellular energy metabolism and ion transport [9–11] and cardiovascular abnormalities [12–14].
It might add:GENERAL INFORMATION
THE INSTITUTE OF MEDICINE REPORT, 2015
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness is a literature review conducted by the then-IOM. A panel of experts reviewed over 9,000 separate studies to produce it. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.
THE INTERNATIONAL CONSENSUS CRITERIA (2011)
The International Consensus Criteria define myalgic encephalomyelitis as a complex disease involving profound dysregulation of the central nervous system and immune system, as well as dysfunction of cellular energy metabolism.
Collectively, members of the International Consensus Panel have:
• diagnosed and/or treated more than 50,000 patients who have ME;
• more than 500 years of clinical experience;
• approximately 500 years of teaching experience;
• authored hundreds of peer-reviewed publications, as well as written chapters and medical books; and
• several members have co-authored previous criteria.
The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings.
In addition to the IOM report, the “General Information” section might mention the ICC
The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.I also wouldn't advertise how expert the authors are by stating how many people they've diagnosed or what their backgrounds are. None of authors of other documents have introductions / accolades in the document, so that would stick out.
The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.
Here’s a shorter version: “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness provides a literature review based on over 9,000 studies. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.”I went ahead and added the ICC to the long doc, thank you; though there are reasons I will continue to leave it off of the short summary.