Question re testimony for CFSAC mtg

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Oct 10, 2009.

  1. AuntTammie

    AuntTammie New Member

    I have been wanting to write something to send in to the CFSAC mtg, but I have been crashing like crazy lately, so I haven't managed to. Today, reading comments in The Guardian, I suddenly found the energy to respond, and realized that what I had written there might be a decent testimony to send to the CFSAC, as well, with a few slight changes.

    However, since I did mention having previously dealt with depression and PTSD, I am wondering what others on here think. I wrote about that in my comments to the Guardian, bc it addressed several other comments, and bc it does accurately represent my experience. I obviously do not want to add fuel to the whole psych approach, though, which is why I would appreciate honest (but not mean) feedback. Do you think that sending something like this in to the CFSAC would be helpful, or do you think that I should revise it to leave out the mention of depression and PTSD? (like I said, I will have to make some changes, regardless, bc some of the stuff was meant to specifically address other comments, and it might not make a lot of sense out of context....and I would want to add something about how the CDC's name and definition have hurt us, as well, and possibly something about the whole XMRV discovery)

    Here it is (and the <> denote italicized words in the original):

    As one who has struggled with depression and PTSD and who became a counselor after recovering from both, I understand all too well what it is like to have a mental illness. Despite the stigma, I have no problem sharing what I have been through with others. I also believe very strongly in the power of counseling, including CBT.

    I have often wished that ME was a form of mental illness, because if it were, there would be more of a possibility of truly getting well. I can also tell you that when I struggled with mental illness, people were more compassionate towards me than they have been with ME. From what I have seen, the stigma associated with ME is worse than that associated with mental illness (and no, I am not downplaying the way that people with mental illnesses are often treated. I think it is horrible and undeserved. I am just relaying my own experience.)

    The reason that I do not want to be told that this is depression or some other form of mental illness, is that it is not. Insisting that it is, has led to treatments such as CBT and GET being used as the only treatments, and that has not only not helped, but has actually harmed many. And, it has not led to other, more effective treatments being found.

    If people with cancer, AIDS, or MS were constantly told that they had mental illnesses and were limited to treatments like CBT and GET, no one would question their frustration. No one would say that they were just afraid to be stigmatized and were causing those with mental illnesses to be further stigmatized in the process. That has nothing to do with their desire to "distance themselves" from mental illness, as someone wrote here. It has everything to do with wanting to find effective treatments so that they can get their lives back.

    That is exactly how ME patients feel. We have nothing against people with mental illness, and we can empathize with how they are treated. However, those feelings do not change what we have, nor will they make CBT any more effective for treating ME. CBT is effective for helping people to cope with having a devastating physical illness, but using it as a treatment for that illness itself is not effective and is seriously hampering the search for more effective treatments.

    Before getting ME, even when I was depressed, and more so when I had recovered from it, I had a much, much fuller, busier, more active life. I worked full time, went to school full time and got almost straight As, went to church, had an active social life, spent time with my family, and was very active physically. Among other things, I trained for and ran full marathons. I absolutely loved doing them. I also did things like sky diving, traveling, going to museums and aquariums, and photography.

    ME has taken all these things and more from me. I did not stop doing them because I am depressed. I am very sad that I can no longer do them. I did not stop doing them becasue I had "irrational illness beliefs" and mistakenly thought that doing very little would help. On the contrary, I tried to continue them as long as I possibly could, and that made me keep getting sicker. I only backed off when my body absolutely would not let me do them any more. I did not stop exercising as I used to because I was afraid of exercise. I am afraid, very afraid, that I will not be able to do those things again. Running, especially has brought me joy for 26 years. It kills me to think that I may never be able to run again. I miss running tremendously. I miss my life tremendously. I want that life back.