There is http://www.butyoudontlooksick.com/ by Christine who is the one with the "spoon theory".
Damn.
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
There is http://www.butyoudontlooksick.com/ by Christine who is the one with the "spoon theory".
In my experience people start listening when I tell them that a study of over a million cancer patients found an association of just one cancer with CFS: lymphoma. I then tell them that a double blinded randomised controlled trial found a positive effect for a drug that is used to treat a type of lymphoma and autoimmune disorders. I then tell them that lots of nonspecific immunological abnormalities have been demonstrated in hundreds of papers and therefore CFS is (on the weight of evidence) most likely to be an immunological disorder.
Of course, boss-man got all the kudos. He never bothered even to apologise - or explain afterwards to the staff he'd abused that it was ok.
I swear one of these days I'm going to write a book titled; "But You Don't Look Sick"
I really haven't followed the IACFS/ME. Is their position something that most of us wouldn't support (like most of the rest)? Will no organization support the ME/CFS Primer?
I am glad to hear that the MEFMSociety of BC and Ntl Alliance for ME support the ME Primer.The IACFS/ME supports its own ME/CFS Primer and the use of the CCC. Although the CCC is a decade old now, it's preferred to the Fukuda definition used by the CDC.
The ME Primer, on the other hand, is part of the newer ICC. Invest in ME has welcomed and fully supports these new criteria, and organizations such as the MEFM Society of BC and the National Alliance for Myalgic Encephalomyelitis support the ME Primer too.
New International Consensus CriteriaI went to Invest in ME to see about how to order a hard copy, but wasn't successful in finding it. I know I can print it, but would be nice to have the hard copy as it would look more professional.
Contact Invest in MEA new standard for guidelines has been published by a leading group of international researchers. The authors discuss the clinical application of their criteria, as well as paediatric considerations and research applications. The authors conclude that they -
“believe the International Consensus Criteria will help clarify the unique signature of ME” and they state unambiguously that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for (Health and) Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.
Invest in ME IiME are the UK distributors for the current Canadian Guidelines and welcome these guidelines. We have for a long time stated that we support an evolutionary development and improvement of the Canadian Guidelines. We believe this is a step in the right direction.
The ICC can be ordered from IiME - please email the charity for this -
In the past we, together with the European ME Alliance, have discussed with our conference presenters regarding updating of the criteria. The International Consensus Criteria are welcomed and we fully support these new criteria. Available to download via this link - click here.
Also, from the Irish ME/CFS Association: http://www.irishmecfs.org/events.html#primer .In hard copy, the ME Primer is available only through Invest in ME, as far as I know, although Marj van de Sande can also be contacted regarding reprinting. It's also freely available to download online.
The webpage reads, "For the printed version, the cover is printed in colour, inside is black and white." My printed copy is in colour, as is the online version. Was a colour version not available?Also, from the Irish ME/CFS Association: http://www.irishmecfs.org/events.html#primer .