ME/CFS Protest at the 6th Australian Health and Research Conference at the Adelaide Convention Centre
I heard about this research conference and thought it was an ideal place to do a peaceful conference to bring our illness to the attention to all the researchers there. We really dont have enough researchers wanting to research ME/CFS and need to make more of this group far more aware of our illness and all the kinds of research which could be done into it. What other illness has so many different fields which could be studied in the one illness? ME/CFS has the potential to attract researchers of so many different research fields especially if they are aware of previous studies in this illness showing issues in thier areas. Let's get many researchers in all kinds of fields, interested in ME/CFS.
Ive heard that in America when ME/CFS people complained of the lack of ME/CFS funding, this lack of funding being given was then blamed by a government department on lack of researchers interest. Thier reply was that if more researchers were interested in doing ME/CFS studies, more funding would be given by the government. So would our governments really be giving more funding for ME/CFS if there were more researchers applying for funds for this kind of research, no matter what country this is all taking place in? Let's not ever let this be a valid excuse for lack of ME/CFS funding.
Getting ready for the protest due to ME/CFS (and I also have Aspergers too) was very very difficult. I had had several offers for help (including one from this site who gave me some money too to go towards the costs..thank you greatly) but unfortunately arent well enough to be gathering people together to do a organised protest with others with me as the organiser. So didnt do the following up with others who'd offered some help. Someone had even offered to possibly get media involved, but with only me going and the fact that I never know how I are.. I couldnt say yes to that offer just in case I just couldnt end up going at last moment (I didnt want to possibly stand any media up!!). So I was just hoping that others would go to that conference and protest too knowing that I was planning to do myself and if not..that was fine too as it only needs one person doing the needed thing, to bring a change. Just going there and doing that was more then enough for me to be doing.
So on Tuesday 27th of November, I got dropped off at the location, getting there towards the end of the lunch break at the conference as I figured during lunch break, more of the researchers would be going in and out of the building to see the signs (due to insomina and waking up late, I didnt arrange to get there as the conference was starting). The day was quite warm but fortunately I managed to find a very cool place there to set my signs up and sit down. The "Myalgic Encephalmyelitis Rituximab 4 ME" sign brought some raised eyebrows from some of the researchers going into the building.
I'd made up ME/CFS info handouts with info on ME and links to ME/CFS research eg mitochondia research, the Rituximab study etc, to give to any researchers who were interested but thou the signs were getting quite a few looks from the researchers, none of them actually stopped to talk to me. With me sitting on the ground too (due to orthostatic intollerance cant be standing up), I guess that would not have made me all that approachable either. There was also nowhere to place the ME/CFS info sheets outside where I was protesting.. and being breezy, I had to leave them in my bag (my signs kept on blowing down. Ive got to remember to bring tape with me next protest).
After an hour sitting on the cool ground, attracting researchers attention of ME/CFS with my signs.. I was needing to lay down and curled up on the towel I've taken with me for that purpose. I promptly feel asleep there. I must be the most peaceful protester in earths history.. a sleeping protest!!
I must of gone into a very deep sleep as thou I heard a far off vague voice in my sleep it didnt wake me up, the next moment I get a loud voice in my ear which shocked me awake.. nearly jumped out of my skin.. it's a security guard wanting to know if Im okay. I assume that one of the researchers must of gotten concerned to see me laying there still by the signs and hence reported my presence to security.
The security guy started asking me questions, why I was there? what did I hope to achieve? and had to write on his report everything my protest signs said to document the situation. He was quite interested as he'd heard all about ME/CFS before throu the media due to the Australian footballer Alistair Lynch. "So you have that illness which Alistair Lynch had?" he asked. I asked him if I was allowed to protest where I was..and he said no it wasnt allowed but that I was not going to get in any trouble for doing it. When I then asked him where I was allowed to protest.. he pointed another place to me. He then told me that he had to go and get his head but that she'd be nice too and she'd try to help me.
The Security head was very nice too and took me inside of the Convention Centre to sit on the soft seats there and asked me how she could help me. I gave her one of the ME/CFS info sheets I'd made up to take to the Medical Conference Organiser to read. The top Conference organiser person wasnt available right then as he was up talking to the researchers at the time but she said she'd would of got him to speak to me otherwise, so I ended up in communication with the one below him I assume. This research conference organiser said she'd seriously consider including ME/CFS research next Conference. I asked for an email address to follow up on all this and got her name and email. (So it isnt definate at all that that our research will be put at the next Australian Research Conference but now has a GOOD CHANCE it may be a subject at next conference and this will be followed up.. there may be certain things which need to be done before this occurs).
She did thou suggest that we approach the conferences in which neurological research is a feature seeing I'd put on my info page that ME is considered as a neurological illness by WHO. Unfortunately as most of us are aware, the neurological field has practically abandoned us, so I myself arent so sure that idea would be good as would neurologists be interested in things such as white blood cell function etc? To me getting our research heard in the general big research conferences in which researchers are there from all the different kinds of fields, I perceive as being more suitable place for our research to be being heard and more likely to get many researchers from different fields involved in our research.
(there's more to my protest adventure but I may tell it another time).
The next Australian research conference is in two years time.. so this gives the ME/CFS community of researchers, doctors and the rest of us, to get the needed things together before the next conference. I'll be trying to work with others to get this to occur. If ME/CFS goes "invisible" again at the next Australian research conference, I suggest another protest about our illness being ignored, done by others in whatever Australian state it is next held in (I assume it wont be being held in my own state twice in a row). I so hope others will follow up my efforts already put in till this serious illness stops going under the radar. ***Fingers crossed** thou that our illness and its (non psych) research will be exposed next conference.
I hope many read this post and consider this kind of protesting, the peaceful protesting at medical research conferences to try to attract more researchers to our field (we need them!) and to help highlight ME/CFS research, of the types which are getting very little publicity due to biased publicity of psych studies of the illness and not all this other research being highlighted.
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Below is the 1 page info page I'd put together (with much help from another who allowed me to use her own letter) to hand out.at the protest. *Note .. a couple of things on it arent correct which I wasnt aware of when I printed it.. (one of the dates is apparently wrong and the bottom link Ive been told isnt going to where it should). I also wish I'd left off the "Dear Doctor/Researcher" at the top. Please feel free to correct this and use it for advocacy etc.
"Dear Doctor/Researcher,
The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
In the Introduction it states "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) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.
Some recent research which caught the attention of ME/CFS clinicians and researchers worldwide:
The October 2011 Journal PlosONE published 'Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatrigue Syndrome. A Double-Blind and Placebo-Controlled Study ' at :
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358
Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
http://www.ijcem.com/files/IJCEM1204005.pdf
Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
http://www.translational-medicine.com/content/10/1/88/abstract
Report of the Invest in ME 2012 International ME/CFS Conference held in Londonhttp://www.investinme.org/Documents/MECFS Conference 2012/Ros Vallings IIMEC7 Report.pdf
Twenty prominent international researchers and clinicians were invited to speak including two Australian researchers.
The keynote speaker was Professor Don Staines (Gold Coast, Australia). He presented auto-immunity as a plausible hypothesis in the aetiology of ME/CFS. He discussed the research programme being undertaken at Bond University over the past 8 years.
Dr Sonya Marshall-Gradisnik (Gold Coast, Australia) presented her work on immunological dysfunction as possible biomarkers for ME/CFS. She pointed out initially that the pathomechanism is unknown, there is no diagnostic test but there is evidence of immunological dysfunction. NK cell function is down, Treg function is implicated in ME/CFS, and research into B cells suggests an auto-immune disorder. There is significantly reduced NK cell function in ME/CFS, which is consistent over time. There are 2 types of NK phenotypes: dim and bright. The dim seem unaffected in CFS, the bright very much decreased. This is consistent over time in this illness. NK cells are regulated by Tregs. One KIR receptor is associated with NK cell lysis reduction. mRNA gene expression relates to GZMA lytic protein which is significantly decreased in ME/CFS – this is a potential biomarker
Many research articles over the years have identified underlying biological abnormalities found in ME/CFS such as those listed under References at the end of the ME:Criteria, and the ME: Primer referred to below. The Primer for Clinical Practitioners (ME: Primer) is available providing advice on how to diagnose ME, which clinicians may find useful at: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf "
Fantastic 
