SUBGROUPS of CFIDSHow would YOU break them down?

Discussion in 'Fibromyalgia Main Forum' started by cristine04, Dec 1, 2006.

  1. cristine04

    cristine04 New Member

    It seems that many doctors are realizing that CFS is a trash bag name for a disease that has several manifestations and varying degrees of severity. In this thinking they are trying to develop a list of subgroups for this disease.

    I am curious as to how all of you would break down the subgroups, ie, what are the major ways that CFIDS symptoms manifest?

    I came up with seven groups:

    a. Neuroendocrine
    b. Infectious
    c. Idiopathic Immune Dysregulatory
    d. Psychiatric and/or Post Traumatic
    e. Gastric and Dysbiosis
    f. Idiopathic Inflammatory
    g. Toxicologic/Exposure related

    These subgroups would not mean that classification under one assumes absence of symptoms from another. Rather, they will work to create focus (a much needed focus, I would add) to a condition that has a seemingly endless spectrum of manifestations. The subgroups would add legitimacy to a disease that too many doctors view as being almost an impossibility in terms of how mutli-faceted a disease process it is. The subgroups will help researchers to specify their objectives and assist physicians and organizations in screening patients for certain treatments and studies. (For example, the Ampligen trial has specifications regarding rheumatoid factor and ANA, two of the more classic inflammatory /autoimmune markers).



    And how would you stage this condition?

    I came up with this:

    I. Mild (but nevertheless debilitating) fatiguability, mild brain fog symptoms, able to drive, able to work but after a full day need time to "recharge" from pain and/or fatigue, leisure time is devoted to rest; Overall Health Rating: 7-8/10

    II. Symptoms impact work and home responsibilities, able to work part time, require more sleep and or rest than at any time before, able to do basic daily chores and drive but not without residual symptoms;Overall Health Rating:6-7/10

    III. Symptoms now requires 1/3 to 1/2 per day in bed or at rest, able to ambulate, difficult to work part time while also trying to complete chores and basic responsibilities; Overall Health Rating: around 5/10

    IV. Symptoms require 60-80% bedrest, occassional assistance needed with ambulating, unable to work or drive, vitality/energy/ability reduced to below 30% of what it was before onset; Overall Health Rating: 3-4/10

    V. Severe, symptoms require 85-100% bedrest, usually need help ambulating, unable to work or drive, vitality/energy/ ability reduced to below 10-15% of what it was before onset; Overall Health Rating: 1-2/10




    I wonder if we could also apply a PFMS rating (Personal, Familial, Medical, Societal) to properly scale how stressful each stage is to one's personal life, one's family, the medical system at large and to society as a whole. (ie, how it may impact the economy when people leave labor market because of illness, get disability). Obviously that could be highly subjective, but in general terms it may help to galvanize various sectors to start streamlining funds into these diseases---because they are costing everyone a lot!!!!!


    Only now do we see doctors commenting on how patients who are later-stagers of this condition are as sick as cancer, Hep and HIV patients. With this newfound, budding respect we need to establish solidarity more than ever!

    Anyway, I am interested to see how all of you will break things down. Nothing beats getting the perspectives of the patients themselves!

    Have a pleasant a weekend as possible!
    cristine

  2. NyroFan

    NyroFan New Member

    Cristine:

    What i had to do was to go from doctor to doctor until one believed me.

    It all went for the best.

    I am concerned about the narcotics, but if I need them, I need them.

    Do not give up: help is out there (and also here).

    nyrofan
  3. cristine04

    cristine04 New Member

    Thanks!! I hope we get more feedback on this!
  4. cristine04

    cristine04 New Member

    for more ideas or input. thanks!