Please Help Promote All Our DDs Together...K?

Discussion in 'Fibromyalgia Main Forum' started by MemoryLane, Jun 4, 2003.

  1. MemoryLane

    MemoryLane Member

    "Associated Disorders:
    Once you have the concept that people fit into boxes like "Chronic Fatigue Syndrome," you artificially separate people from the causes and connections that link their disease with other diseases. People with chronic fatigue are said to have associated symptoms. You have to consider that chronic fatigue is a little box inside a much bigger box. You then ask: "what is the common cause or common mechanism of all the conditions in the bigger box?" ~ ~ Excerpt from Nutramed ~ ~

    This is a question I would like us all to find the answer to together, because I feel we are the core of research right here - united, we are that bigger box. We all have so much to share and so much in common. On a person-to-person level, we have shown compassionate support for each other on this board, regardless of diagnoses. We have already learned we can have a wonderful impact in helping each other with the overwhelming personal problems, the medical obstacles and the overlapping stressors we encounter everyday.

    We share thoughts on symptom clusters, patterns of illness, our hopes, needs, fears and losses. Rather than allowing our conditions to define that smaller box exclusively for FMS, CFS, etc., let's at least make them cubicles...an open-air concept for all to experience. We should communicate this same model to educate and promote public awareness for "Chronic Illness", instead of solely for FMS or CFS.

    I for one believe we have a fantastic, caring and powerful exchange of human interaction.

    Just some thoughts,

    Lane


    [This Message was Edited on 06/05/2003]
  2. Mikie

    Mikie Moderator

    No doubt that some of the illnesses suffered by Gulf War Vets was caused by chemical exposure, but many who served on ships and never set foot on soil there have come down with GWI. I still believe that the vaccines were contaminated with mycoplasmas. The fact that many of their spouses also got sick seems to suggest an infective agent. Our own DOD developed the weaponizing of mycoplasmas and gave this technology to Saddam when Iran was our enemy, so it is possible that some vets were exposed to it that way; however, this still doesn't explain the sailors who have GWI.

    Mycoplasma contamination has been a problem in vaccines. There are other contaminants as well.

    My illnesses were triggeed by a mycoplsma infection just before the start of the Gulf War. I lived next door to a military facility where soldiers were getting vaccinated. I believe the govt. stonewalls to cover up their own involvement in illegal biological weapons research.

    Love, Mikie
  3. MemoryLane

    MemoryLane Member

    Rather than [us] just promoting one illness over another, lets speak in one voice for "Chronic Illness".

    One thing I did learn from the SSA rulings which should also apply to any one looking here for answers - A specific diagnosis in not even required, only signs and symptoms.

    I included GWS and PTSD as examples, because there are people on this board who are here because of these illnesses and the resulting overlapping symptoms and I was trying to be sensitive to others' feelings. By the way I meant to also include MCS. Until more is known about the pathology of these diseases, including diagnosis and treatment plan, we are all pretty much in the same [life]boat.

    Besides, under the new recommended guidelines for the CFS name change proposal, these conditions may become subsets:


    V. Utilization of subgroups

    Under the Neuroendocrineimmune dysfunction syndrome, we recommend the following subtypes:

    A. Myalgic Encephalomyelitis

    B. Fukuda et al. (1994) criteria [currently used as the CFS criteria]

    C. Canadian clinical criteria

    D. Gulf War Syndrome



    Peacefully and respectfully,

    Lane
  4. garyandkim

    garyandkim New Member

    and peint out reports etc. Some we write office copy on others we leave. Put them every where we have put them in schools, family, hospitals, docs offices, grocery stores, hair places, drug stores you name it. We must all do what we can and we all can get the guides here so easily and free 99 at a time as ofton as we'd like and we do go out places once in a while, so we can put them out.

    Thanks Lane, Kim and Gary
  5. layinglow

    layinglow New Member

    I don't believe you need anyone to validate the positive post that you made. It is very true that if all that suffer from the various syndromes you mentioned, became more united in one voice, we would certainly have a greater chance of being heard. It does not matter how a particular syndrome was contracted--there is no agreement on most, only a range of symptoms. It is the effects and stigmas that unite us, and that we should concentrate on. It is the lack of research and funding that should drive us.
    Certainly GWS, just like FM, or CFS, could have multiple triggers or one, we simply do not know definitively at this time. We do know that a united front would benefit all of us, and your ideas about this are certainly beneficial.

    Best wishes, LL
  6. Mikie

    Mikie Moderator

    And my post on GWI was to clarify what I believe may be a misconception on what caused it. No one knows that GWI is not CFS nor FMS and no one knows for sure what did cause it, but exposure to chemical or biological weapons is just one theory and should not keep GWI from being under this umbrella of illnesses. All these illnesses have a lot in common and by uniting efforts, it may well have more impact.

    I guess the question is, where does one stop? Many researchers believe RA, ALS, Parkinson's Disease, Lupus, and MS are all related illnesses. Most of these already have their own foundations lobbying for recognition and research and probably would not want to give up their proprietary piece of the pie.

    I do think that the other immune illnesses you mentioned would do well to come together. Polymyalgia Rheumatica should probably also be included. I'm sure there are lots of immune/neurological disorders which could be included as well.

    Love, Mikie