August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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The Free ME Global Chronicle - February Edition Available Now (92 pages)

Discussion in 'General ME/CFS News' started by Dolphin, Feb 23, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    I found:

    on pages 26-28 of interest.
     
  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    USA
    On my hi-speed connection it took a while to download, but worth the wait.

    Pages 46-48:
    Richard Podell MD reviews a 2011 study done by Harvey Moldofsky regarding the use of very low dose Flexeril on sleep (positive results).

    Link to the 2011 Moldofsky study:
    http://www.jrheum.org/content/38/12/2653.long
    Effects of Bedtime Very Low Dose Cyclobenzaprine on Symptoms and Sleep Physiology in Patients with Fibromyalgia Syndrome: A Double-blind Randomized Placebo-controlled Study

    I started a new thread for the 2011 study on Cyclobenzaprine (Flexeril) for sleep here:
    http://forums.phoenixrising.me/inde...in-fm-patients-2011-double-blind-study.43241/
     
    Last edited: Feb 23, 2016
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    Wow, that's a long read. Think I'll print it out to read later.
     
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  5. Justin30

    Justin30 Senior Member

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    I havent been sick all that long, but read the true reality of pain and suffering in Chronlnicles like this and it just brings me so much sadness. I am mostly housebound now and realize how much worse it can get.

    I know we are very sick people. People with AIDs were too. I see that we have groups working for us and read the cries of desperation for change. But besides small battles won, 30 and 40 years have been lost to greed, politics and the label of mental illness.

    I know that things are starting to change and this does spark hope in the minds of many. But the more I read and the more I think about this, I question, is the stand strong enough to pave way for the solution to this apparent never ending problem know as ME/CFS.

    I ask myself are we united and what results have we seen? I ask myself why do we discuss what ways may or may not lead to small and sometimes incremental QOL increases? I ask myseld what more can I do? What more can my family do? What more can my government do? What more could the committees that represent usw do? I keep asking myself these questions as though I feel like I am running out of time that I must free my mind as to what I envision true change to look like.

    I was born in 1985 and this was when the whole AIDs thing started to take shape and work started to be done to solve the puzzle. I really dont know a great deal about it but I remember a picture of a man in wheelchair being pushed with signs and thousands of people walking behind him.

    What I know now that ME as I will choose to call it affects 500k in Canada, up too 2.5 million in the US and 17 mil plus worldwide. These are staggering statics of epedemic proportions.

    We have many advancements in modern day technology and science which is a plus. But I wonder since than has any group stood and used these advancements and rallied? had anyone even pondered the idea of using these advancements to rally? I know the answer is no cause most I believe are to sick, house and bedbound, many are searching for answers, mild cases can be managed and lifestyles can be adapted too, but an all to familiar poll on this forum reminds me that in most cases the disease progresses.

    Like many my previous career involved problem solving and implementing solutions, I am University Educated and lead an imperfect, perfect life that I was content with. I am not content with ME, I am not content nor smart enough to solve this problem and I am especially not content with those that are severely afflicted. It brings me a feeling of pain, suffering, loss, a feeling that could only be described by a person suffering this illness.

    My view of this whole ME thing is that we are invisible to the world, lost to our friends, former colleagues, and family.

    I read what was said in this 92 pg document and was just sad that so little it seems is getting done and I dont blame the ME Community but I feel as though if we don't use technology to our advantage and showcase our pain suffering to world that we could (I am not saying will) be in Jeopardy of many more years of pain.

    I think like why not contact the famous people who have this condition and are crippled by it. Could they do an interview from home? Could everyone send their story to every major paper on the National ME day? Could we fill these news papers and online posts with stories of neglect and harm done by the medical commuity? Could we set up large screens with huge speakers showcasing mini clips of all of housebound patients? Could we use the bright minds like those on PR to generate ideas to have our voice heard? Could we unite as one large community so that we are not disjointed and so that we are on the same page?

    I don't know what we should do? But I do know we have been dieing in the shadows for years now.

    I saw Whitney Dafoe in a picture in this Chronicle and he is one of us and I pray we as whole do something so that people trapped in situations like him do not have to suffer any longer.
     
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  6. Sean

    Sean Senior Member

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    In which case they should accept the null result from the 2.5 year follow-up study, and all that it implies.

    Fair enough?
     

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