Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Advocacy--data sharing, transparency...(split from the Laura Hillenbrand thread)

Discussion in 'Advocacy Projects' started by Justin30, Aug 19, 2016.

  1. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    The following posts have been moved from the thread
    Laura Hillenbrand: Leaving frailty behind

    This great news and I happy for her but as a patient community disclosing what works and does not work leaves questions unaswered to ask their Drs and caregivers.

    I see people sharing lots of info and a lot of info is out their but protocols seem to be unavavailble. Symptoms not described etc.

    I know this seems like a lot to ask of a person but transparency on many levels symptoms, tests, drugs user wood help people get access while meager results and limited funding keeps us hidden from public eye and with virtually no fubding for the disease burden.

    I just cant say enough.....we need help and exposure and transparency....

    I never read the full post so if this has been discussed great. If not I am waiting for the over 20 ME Organzaitions in North America to get on the same page and figure this out. I dont know why MS, and so many other weird multisystemic issues can get figured out and they cant even subcatagorize one subset of ME or Fund Lipkins Work.

    At this point with all the good that is happening I hate to drop the bomb and Hijack the thread but the NIH has not given money to Dr Ron Davis or Lipkin...none to one and barely any to the other.

    What does that say seems like there is much writing on the wall.

    Great remission story maybe we could hear about the protocol or what Standford is doing currently so those that dont have much money can see what protocol looks like....similar to what Dr Chenney did for us.

    Congrats on the remission...great story...hope this is the end of ME for this young women...
     
    Last edited by a moderator: Aug 19, 2016
  2. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    Do you mean sharing data among us at PR? If so, what kind of format do you want it in?
     
  3. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    Yes and no not on only PR more clinical data on the drugs used in sequence. Clinical data on the drug used for ME CFS. Not just what is said in a chat room or on a write.

    Further for the yes drugs specific, symptoms, tests, legnth of time sick, trigger, etc.

    If PR cant organize a well organized way of doing this the our ME Groups need to set up easily accessable, concise, forms with check boxes, etc. This is just an example.

    This needs to be used for data collection, to subtype, classify and determine constellations patterns so that theraeutic options can be monitored.

    ME as a whole is so dijointed and the funds are not coming in nor the researchers.

    I see article after article or good news but still no money, still very little action, and I see we support eachother online as for some this is all we have.

    With this being said the ME groups that contain healthy individuals need to collaborate as one. Not as pieces. This limits strength and word of mouth especially when people do not agree.

    Once the disease identified then break away and focus on what the group is looking for and whats done.

    I bet if 250 million got put on the table tommorow from the NIH. Hords of ID, Immunologists, Edocrinologists, Gastros etc. Would research and peopose idease.

    Now I see just what a mess this whole me thing is...no collaboration that is effective.

    Some said make a commercial. Was it Ever looked into MS got exposure that way.

    Some one said make a Change.org petition. I sent this months before to ME Groups and Advocates but it took Mary G to do it.

    Someone said contact groups like lyme, POTS, MCAS, Encephalitis, etc. To gain support? Was it done well attempted but nothing came of it. Same symptom clusters. HIV used Hep C patients.

    Social Media.....its there but seems to be a double edged sword.

    Contact Politicians, beureaucrats, etc. Its happening but I bet if a group of 20 ME Organizations walked into the room...something might not get well we will revisit in 3-6-9 months.

    Law suits......for miss diagnoses and years of suffering if u dont actually have ME but ur physicians and specialists failed to follow testing guidlines? Your now harmed cause nothing was done when it was treatable and u just accept?

    Disability law suits and care IOM said real biological illness.....grounds for an arguement...

    I made polls in hopes of sending it to Drs. Barely any got filled out thanks to those that did. Not nearly enough faded away no more replies or posts.

    We are sick, dieing etc. When are the groups really gonna step up the heat and do something.

    Im bothered by going off topic but seriously. When u look at it as a whole they wont even give Lipkin or Davis money....

    What a joke.....

    I have emailed conversed and suggested actionable solutions, government, groups, advocates, etc.

    Sorry for the negative nancy bash....but watching it is just so wacked and I feel so bad for all that is happening. The suffering.

    I want to divulge more cause I want to help. But choose not share on hear. Makes no difference as the ears arent in the right places. They havent been for 70 yrs. Head scratch....

    I like hearing srories of hope and miracles and pray for them for all of us.

    Great on the remission.
     
  4. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    @Justin30

    You are making many excellent points. Furthermore, working in silos serves to slow down the process of identification of the tests to confirm a diagnosis, subtypes, and treatments. Since we seem to be quiet about forcing the researchers and front line doctors to collaborate, nothing will change. We expect our US government to force the collaboration (and break the silos), which is ridiculous. Our research community needs to set the example of working together, sharing data, and creating a working model (science and clinic). The researchers with funding need to stop ignoring emails from front line doctors that want to collaborate. There is no 'open medicine', it's by invitation only, a 'group think' model. If you want things to change then start writing letters, start petitions to the scientists (taking millions of dollars). Don't support or donate to any scientists that refuse to work with the front line doctors that want to collaborate. Remove the links from your PR signatures; send a firm message that you demand collaboration.
     
    Last edited: Aug 19, 2016
    Justin30 likes this.
  5. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    Very well Put one huge thing you eluded to was Silos.....this is absolutely a major problem...i have Degrees, Diplomas and Certifucations....i have written consulting reports while in University while working with the largest health care Associations where I lived. My father a Government and Healthcare consultant for over 15 years trained me.

    The Silo affect in Business, Politics, goverment, etc is an absolute breading ground for wasted time, money and resources. I hve witnessed it first hand on several occasions to the point where my Jaw dropped and in early 20s was asking directors and VPs why were you taking something done already that was working, not sharing it amongst others and having people create the same things over when it was already done.....blew my mind....

    This can be directly attributed to ME Organizations and how they are running currently. Further to this the Drs, Researchers etc. Are doing much the same.....how many more years does the ME community want to wait to see some results....its already been through over 70 yrs.

    Absolutely great points. Its great to talk and support is neccessaey through PR but real tangible actions and steps need to be laid out in their most primitive form. You can ask me what I mean by this ill openly share.

    We all just want to see the neglect, pain and suffering stop or be limited to improve QOL.
     
    Groggy Doggy and Jennifer J like this.
  6. anniekim

    anniekim Senior Member

    Messages:
    768
    Likes:
    671
    U.K
  7. Groggy Doggy

    Groggy Doggy Senior Member

    Messages:
    1,127
    Likes:
    4,132
    @Justin30

    Its easier to defeat an army that is sick. Standouts like the 'ME Fierce Five', Vastag, and a few other contributors are exceptional. Many of the healthy people have their own agenda; their own spin. The gov't is slow and bureaucratic. The CDC bungled their chance to resolve the outbreak in Lake Tahoe in the mid eighties. So 70 years post the Los Angeles outbreak, we are here, with no FDA treatments.

    I have cognitive issues (dyslexia meets executive functioning), which makes it very difficult for me to advocate for the severely ill. I know the severely ill need access to affordable treatments, but I am obviously unequipped to figure out how to match up the existing treatments (help ME peeps), with the scientist that can prove they work.

    All I can hope for is that a scientist will eventually choose to look thru Galelio's telescope, and start to see ME is a more organized fashion. At this point we will start to make faster progress toward getting treatments thru the FDA and into the hands of the severely ill.

    Feel free to PM me if you want more details.

    GD :dog:
     
    Justin30 likes this.
  8. alex3619

    alex3619 Senior Member

    Messages:
    12,480
    Likes:
    35,012
    Logan, Queensland, Australia
    The silo effect has been discussed, and even formally discussed by researchers ... see the State of the Knowledge commentary a few years back. We have tried getting patient derived data set up at least twice, and I do not recall reading anything about that for years. I think Kogelnik is trying something like that too, but more formal, but again I do not recall reading anything on it for some time. I think some of us use things like Patients Like ME or something. Maybe someone using those sites can comment?
     
  9. Justin30

    Justin30 Senior Member

    Messages:
    1,065
    Likes:
    1,280
    @alex3619 thanks for filing me in i figured the silo effect was discussed. Its not hard to see it happening.

    This is a large task if you are ill to get organized, dealing with just living.

    Thank u for the info.
     
    Groggy Doggy likes this.

See more popular forum discussions.

Share This Page