Talk:Primer for patients
Moved these RE templates here for now.--DxCFS (talk) 18:49, 26 March 2017 (PDT)
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Better way to maintain 5 primers?[edit source | reply | new]
There are 5 primers, and I see that most of the material is the same in each primer.
I wonder if there is a better way to maintain the 5 primers, other than making the same change in all 5 primers.
Would it make sense to put all the common material into a single Template, and have each of the 5 primers implement the common Template?
Do we need to rethink the purpose of the five primers, and maybe reduce them to a more manageable 3 primers?
All ideas welcome! Thanks!
Pyrrhus (talk) 17:26, 26 February 2019 (EST)
- No. I hate using main pages/templates and only use them when a page becomes so long that you just cannot edit on it anymore. I want to see everything on one page. I broke up the Fibromyalgia page because it could not be edited and was very, very long. I did the same with the ME and PACE trial pages because they could not be edited anymore. PACE trial Trial By Error section was given a main page since it already existed and no one was keeping up the articles on the PACE trial page.
- Thanks for the feedback! I think you misunderstand- Templates have nothing to do with 'Main Pages' and have nothing to do with breaking up a long page into smaller pages. Templates provide a way to make your edit on only one page and have it automatically be changed in all 5 primers. For more info, see https://www.mediawiki.org/wiki/Help:Templates
- Pyrrhus (talk) 18:00, 12 March 2019 (EDT)
ME/CFS is not contagious - not enough evidence to say this -- notjusttired (talk) 11:15, June 19, 2019 (EDT)[edit source | reply | new]
So little is known about how ME/CFS is caused and developed that we cannot claim it's not contagious. The two main sources here are very weak and don't meet MEpedia Science guidelines, especially the ProHealth blog. The sentences I have issues with are in bold:
ME/CFS is not contagious
There is no evidence that ME/CFS patients are contagious.[39]
Initial infectious triggers have led to outbreaks over the years and 72% of ME/CFS patients report an onset of a viral or bacterial infection.[40] Families, partners, and friends do not report contracting ME/CFS from someone with the disease ME/CFS nor do patients report passing it on to others.[41] Because ME/CFS can run in families, a genetic link is a recommended line of research by the CDC.[42]
Extensive look at charity FAQs, books and research found only a handful of references, as below. notjusttired (talk) 11:15, June 19, 2019 (EDT)
- Blood donation - No longer allowed, abnormalities found in red blood cells, some white blood cells (PMCs), and Fluge et al. (163) also demonstrated in vitro that serum transferred from patients' bodies adversely affected the function of healthy, cultured muscle cells. [4][5]
- OMF - We can't be sure yet if it's an infectious disease. Michael Sikora, in collaboration with Mark Davis, PhD, Lars Steinmetz, PhD, and Ron Davis, PhD, at Stanford University, will examine the role of T cells and immune-related genes in ME/CFS. This may help address the outstanding question of whether ME/CFS is an autoimmune or infectious disease, or simply an activation of the immune system[6]
- Byron Hyde - In his opinion only, from his little red book, it is an infectious disease, and symptoms begin less than a week after contact with the infection. He says: The first phase is an epidemic or endemic infectious disease generally with an incubation period of 4 to 7 days, where in most, but not all cases, an infection is evident.[7]
- World Health Organization classes it as neurological and not in the infectious diseases section, ie if it is or can be infectious it is not primarily regarded as infectious
- No special precautions needed - Those nursing patients do not need to take extra precautions to avoid catching it - Greg Crowhurst (a nurse) does not suggest any precautions[8] (but is handwashing etc suggested to avoid passing infections on the pwME?
- Underhill's study on unrelated housebound members - Underhill concluded that close household contact and genetics were both risk factors for CFS, finding 32% of spouses/partners of those with CFS also had the illness.[9] (Full text) This was a higher prevalence than all genetic relatives except children.
- Charities don't mention precautions to avoid catching the illness from others
E.g. ME Association, MEAction, Emerge, Invest in ME Research - just literally not there on their website.
- CCC states: ME/CFS is primarily an endemic disorder (30,31) but occurs in both epidemic (2,32), and sporadic forms.
- Agreed. The earliest reports on M.E. talked about case histories where genetically unrelated people in the same household came down with ME in an apparently contagious manner. There are also ample patient reports about genetically unrelated people catching ME after close, prolonged, contact with ME patients. I think the heading should be changed to “Is ME/CFS contagious?” Then the available references can be discussed. Finally, we can conclude that “Although ME/CFS may be infectious, there does not appear to be a risk of catching ME/CFS from casual contact with an ME/CFS patient.”
- Re: early reports on ME. The Oct 19 1957 BMJ article on the Royal Free hospital outbreak says “there were a number of cases among the relatives and friends of staff who had paid single visits to one of the hospitals.” The 1938 report on the Los Angeles County General Hospital outbreak says “According to cited reports ... the epidemic ... was characterized epidemiologically by ... apparently high communicability”. The original 1959 definition of ME by Acheson says “The epidemiologic features are ... a predilection for residential communities, a higher attack rate in women than men, a tendency to occur more commonly in young adults, and the commencement of most outbreaks in the summer months. The evidence is consistent with the hypothesis that the disorder is an infection which is spread by personal contact.”
- Hope this helps. Pyrrhus (talk) 14:52, June 19, 2019 (EDT)
- Agreed. The earliest reports on M.E. talked about case histories where genetically unrelated people in the same household came down with ME in an apparently contagious manner. There are also ample patient reports about genetically unrelated people catching ME after close, prolonged, contact with ME patients. I think the heading should be changed to “Is ME/CFS contagious?” Then the available references can be discussed. Finally, we can conclude that “Although ME/CFS may be infectious, there does not appear to be a risk of catching ME/CFS from casual contact with an ME/CFS patient.”
- ↑ Cairns, R; Hotopf, M, "A systematic review describing the prognosis of chronic fatigue syndrome" (PDF), Occupational Medicine, 55: 20–31, doi:10.1093/occmed/kqi013
- ↑ Johnson, Cort (July 6, 2013), "ME/CFS Prognosis", Health Rising
- ↑ Joyce, J; Hotopf, M; Wessely, Simon (March 1, 1997), "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review", QJM, 90 (3), doi:10.1093/qjmed/90.3.223, PMID 9093600
- ↑ https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full
- ↑ Fluge Ø, Mella O, Bruland O, Risa K, Dyrstad SE, Alme K, et al. Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome. JCI Insight (2016) 1:e89376. doi: 10.1172/jci.insight.89376
- ↑ https://www.omf.ngo/2018/06/04/omf-funded-research/
- ↑ Hyde, Byron (May 12, 2006). A new and simple definition of Myalgic Encephalomyelitis and a new simple definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis and an Irreverent History of Chronic Fatigue Syndrome (PDF). pp. 1, 10.
- ↑ Crowhurst, Greg (2005). "Supporting people with severe myalgic encephalomyelitis" (PDF). me-foreningen.dk. Nursing Standard – via Art and Science Chronic Illness.
- ↑ https://www.tandfonline.com/doi/abs/10.1300/J092v13n01_02
