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we are all in this together

I am reposting this from something I wrote on CFSKC. It is something for us all to think about. I'd like to clarify that I am talking about this in the sense of activism and avoiding attacking people. I am not suggesting that we be medically, artificially unconditionally grouped together. Rather, the only way we are going to make solid political progress is if we all work together. If we do not, we are only serving those who want us to fail.

We all know that the XMRV news coming out is exciting, what we don't yet know is how many will test positive. We have been begging for years that this illness be divided into subgroups...but we must remember that does not have to mean we will end up against one another. I don't want to offend anyone but this is a dialogue that we need to have as a community.

I have a sinking feeling I will be in the XMRV group, my onset and symptoms are too much like the group that WPI is focusing on to expect otherwise. (however much I may wish that I do not have this virus!) I strongly suspect I am one of the people who is about to get "peeled off", so to speak.

But we all know it will not be that way for everyone, and I'd like to take this time to think about some of the implications of this fact. In the end we are all being abused by the government and the medical system. In the end we have all been neglected by research and made to feel like we do not have a right to feel as sick as we truly do feel. Regardless of what each individual's viral status ends up being, we can't forget we are dealing with the same problems and that the more divisions we drive between ourselves the more we are asking to fail. For example, type one and type two diabetes have very different causes and issues, but diabetes advocacy, for example, does not discriminate based upon what type you have. And neither should we. If we do we are destined to fail, no matter how much scientific evidence is on our side.

We have been asking and begging for subgroups, we have known all along that our shared symptoms do not all add up to the same causes or same cures. I feel like prior to this research coming out I had read that WPI felt their research was focusing on a subgroup ( I cannot find the article now, unfortunately) It may of course turn out that this virus is something that we all have. It is just too soon to tell. But what if it isn't? What if, with more widespread testing this only peels off, say, 30% of patients?( I just made that number up) That doesn't mean the research isn't valid and very exciting. But it also doesn't mean the illness of the remainder is any less valid. When we are on the cusp of getting to the very exciting and long-overdue point of subgroups we cannot let that advancement tear us apart. Of course we are eager to find a way out of the "CFS" "wastebasket", but we can't just throw everyone who does not get out on the same ticket under the train.

Over several groups and websites I keep hearing a lot of people referring to XMRV as "real CFS". Stop and think about what that is going to do to all the people who end up having what is implied "fake CFS". Are they going to be left behind? Are they going to be told that it must really have been in their heads the whole time? That there are no answers and hefty research funds for them? We all know what it is like to be treated that way and the saddest thing I can think of is if we end up treating each other in this way we have hated being treated. So what if there ends up being type one two or even three "CFS"? So what?

Does that mean that any one type is better or worse or more valid than any other? No. All it means is that there are more answers for one type than there are for other types. It doesn't mean we should stop looking for the cause of all cases. And it doesn't mean we haven't been subject to the same forces and problems (governmental, medical, social, occupational) all along.

Of course I hope we find answers and solutions for everybody. I hope I am wrong and that we all end up with the same cause, but we really do have to think about what repercussions our actions will have if that doesn't happen. I want to see a day when there is a cure for everyone.

Comments

Thanks, sarahg, for this.

I think you make excellent points. It is interesting that we are already making judgments between "real CFS" and others ("fake CFS"?, how very sad), when none of us even know our own status. If anyone should understand how hurtful this is, it is the ME/CFS community. I join you in hoping that we stay cohesive as a community so that no one is left behind.

Gracenote
 
sarahg,

Your words here are very important. I, for one, commit to helping us all out and not trying to marginalize any ME/CFIDS patient or group of patients. I hope others will seriously consider what you have said. We have all been abused equally by CDC, NIH, UK NHS et al.

Peace
 

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