New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard

Discussion in 'Phoenix Rising Articles' started by Jody, Sep 22, 2016.

  1. Jody

    Jody Senior Member

    Jody submitted a new blog post:

    Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard

    Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible


    From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn't get chosen for baseball, for the person overlooked by the boss, whose name is left off the group photo.

    It's also true for people who are sick, but don't look like there's anything wrong with them.

    Lisa Copen founded Rest Ministries in 1996 after being diagnosed with rheumatoid arthritis. She went on to establish Invisible Illness Awareness Week in 2002.

    Invisible Illness Awareness Week runs from September 26 to October 1, 2016.

    Lisa has made a difference for others who are ill, and has helped to create a community for herself and others in the same boat, cut off from the rest of the world.

    She wasn't going to be invisible, and the hordes of other sick people w suffering in silence, often without acknowledgement or help, were not going to be invisible either. Not if she could help it. And over the years, both her vehicles have shown great staying power and growth. People like Lisa have helped the invisible illness community immeasurably.

    Many conditions are described as being invisible because the effects are not obvious to the casual observer. ADHD, allergies, asthma, autism, brain injuries, celiac disease, Crohn's disease, depression, diabetes, epilepsy, fibromyalgia, IBS , lupus and ME/CFS are just a few of the invisible illnesses and disabilities.

    Disabled World reports that almost 50 percent of Americans contend with some kind of invisible condition.

    As you and I know all too well, there's invisible, and then there's invisible. And ME/CFS is invisible in another way as well. It is still ignored by most of the powers that be ... treated as if it doesn't exist. The research isn't forthcoming, the honest evaluation isn't there and misdirection and maltreatment for vulnerable patients abound.

    Some invisible illnesses are more invisible than others, and we know that better than most. When ME/CFS is talked about, it's a crap shoot as to whether it's going to be anything we can stand to hear.

    Are we going to again be called a group of malcontents, of fakers, of stupid people who don't know enough to move around a little? Are we going to be called hostile, vexatious or troublemakers who don't know their place?

    Will we be denigrated because many of us can't work or take care of ourselves? Chastized for not pulling our weight? Given the cold shoulder because we don't help with Christmas parties and family get-togethers?

    Are we viewed with suspicion because we look fine and yet do nothing? What are we trying to get away with, or from? What are we trying to prove?

    Surely what we are saying can't be true. Nobody can be THAT sick. An hour of some kind of effort surely doesn't put someone to bed for months at a time. What is this game?

    So an unwelcome invisibility and lack of acceptance, lack of respect, has covered us like a cloak.

    Every person with an invisible illness has experienced some of this. And every person with a disrespected illness like ME/CFS has experienced a great deal of it. But we don't have to cooperate with this dismissal, and we refuse to do so.

    About 65 percent of Americans who search online for answers have one or multiple chronic conditions, according to the Pew Research Center's Internet and American Project.

    Events and pushes like Invisible Illness Awareness Week are a way for us to step up -- even if we cannot physically stand -- and be heard. They are a way for us to join forces and no longer be stuck alone in a bedroom or staring out a living room window on an unconcerned world that is passing us by.

    This era of electronic gadgetry makes it possible for even some of the weakest and brain-disabled of us to reach out and make contact.

    We talk to each other. And we talk about each other. We are shored up by support and have the temerity to open our mouths to people in our own small "real" worlds.

    We stop apologizing so much. We say why we can't come, or go, or work. We describe our symptoms to people who want to hear us.

    We begin to believe once more that we have a right to take up space and to use up resources, to have an impact on those around us, just like a "normal" person -- or just like we used to before being enshrouded by an invisible illness.

    We write blogs, and hope other sick people will read them and be nourished somehow, and that healthy people will read them and become enlightened about how the other (invisible) half lives.

    We join forums and have conversations about how we manage our difficulties, how we feel about being overlooked, what our cat did today that was so funny and is it safe to colour my hair?

    We learn from each other's research, from each other's doctor visits that have been helpful, from each other's experience. We drink in the encouragement, the love, the acceptance from others who know how tough things are, and know how parched we are.

    And we turn to face that outer world with our Awareness Weeks and expect our voices to be heard, expect our struggles to be respected, expect some action to be taken on our behalf.

    The theme for this year's Invisible Illness Awareness Week is "This is Chronic Illness."

    Think about marking this Awareness Week of 2016 by writing about your illness or making a video. Put what matters to you on your Facebook page, on Illness websites, on blogs and forums. Some of you have already been doing this for some time. Keep going.

    If you share your story someplace online, sending a link to the Invisible Illness Awareness Week's Facebook page would be great encouragement for Lisa and friends.


    About RM.

    Invisible Illness Week Coming (Sponsored by Rest Ministries).

    Invisible Illness Awareness Week facebook page.

    Invisible Chronic Illness Awareness Week Was September 10-16, 2012.

    National Invisible Illness Awareness Week: Sept. 9-15, 2013.

    Join the Invisible Fight: It's Invisible Illness Awareness Week.

    We Honor Invisible Illness Awareness Week, Sept. 26 - Oct. 1, 2016.

    Photo via unsplash/Pixabay

    Support Phoenix Rising

    Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising's Donate page by clicking the button below.


    Continue reading the Original Blog Post
    Last edited: Sep 22, 2016
    Sushi, dangermouse, Roy S and 7 others like this.
  2. lauluce

    lauluce as long as you manage to stay alive, there's hope

    how to get rid of a minority? simple! MAKE INVISIBLE. Better yet, make their members invisible among themselves, so ashamed and fearful about speaking about what happens to them that two of these persons could meet at a bar, chat for hours, and never realise they are on the same boat! At least here in my country, Argentina, they succeeded at doing this with ME suffers. We are isolated one from another, we don't even now how many of us we are, as nobody is diagnosed and as I said before, everybody is afraid to speak, to not be psychologically beaten with speeches about mental problems, lack of will, victimisation, etc. Together, we are one, we are STRONG. Separated this ways, we are just a thousand cries in the dark that nobody would ever hear... here, they're winning
  3. Jody

    Jody Senior Member


    We'll just have to keep raising our voices together.
    lauluce likes this.
  4. TenuousGrip

    TenuousGrip Senior Member

    I lost everything -- my house, my life's savings, and my health -- because I'm disabled and needed (and asked) to be able to sleep in my first-ever, brand new home in Colorado.

    And now I'm in horrible shape.

    Please Google: Destruction of a Disabled Man In Colorado

    Never again .....
    Last edited by a moderator: May 6, 2017
  5. Wifi123

    Wifi123 Senior Member

    Jody, all the best on your invisible week awareness. I have suffered what I call as "My Silent Illness", which I suffered from the 1960s to the 1980s, and was diagnosed ME, CFS, and FMS over the next two decades. And after researching, I found my silent illness well documented in medical documents at
    Jody likes this.
  6. Pen2

    Pen2 Support, Good Medicine.

    Maryland, US
    Jody, I too wish you the best on your "Invisible Awareness Week". Although I was diagnosed with all the symptoms of ME/CFS 17 years ago, I was never told anything about what it meant for me, no treatment, no direction, no hangout to read about it, no website to look up about it just sent on my way back to work.

    I then struggled for over 14years trying to keep up with the rest of the quote: "normal people". Feeling inferior, a complainer, hypochondriac! Fired from my job for being absent too many times. I lost all confidence in myself and blamed myself.

    Finally I was so sick, I told my doctor I was unable to understand why I was so sick. Grateful to say, he understood. He had researched this invisible disease told me I needed to stop trying to push myself, stop working if I can, and started treatments until we found something that at least helped my OI a little.

    So it's been 1&1/2 years since I stopped working. As we all know it isn't a fix just reality. I'm still trying to learn how to live. Trying to learn how to talk to people who are the critics. Trying to except that even my family and children don't understand why I'm not getting up and doing more. That I'm not lazy, not giving up.

    This and all invisible diseases can be very lonely. I'm working on building my confidence and understand that it's ok if others don't understand because I look fine.

    So I hope your awareness week is a success!! Keep up your perseverance, we need each other. Thank you for your writing, thank you for posting now
    @Wifi123 .

    Let's keep moving forward no matter how much our bodies hold us backward. :hug:
    Jody and MEMum like this.
  7. Avenger


    Dear Judy,
    I have had ME/CFS and Fibronyalgia for 18 years. I was formally diagnosed with D-Lactic acidosis without short bowel syndrome.

    I am writing this to make others aware. ME/CFS has the same symptoms as D-Lactic acidosis. I was mistreated by doctors and even given a Somatization (psychological) diagnosis because my symptoms were so severe and Doctors could not understand or believe them, much like Jennifer Rhia's. I have included Sheedy et al's report from 2009 stating the simnilarity between CFS/ME and D-Lacic acidosis and speculating that a subset of CFS/ME will have De-La.

    I have D-Lactic acidosis without short bowel syndrome (there are many causes including poor motility and diabetes). D-Lactic acidosis may be far more common than we think (Dr. Luke white has written that anyone with bacterial overgrowth may be at risk and many CFS/ME have bacterial overgrowth and gastrointestinal symptoms).

    I noticed that my symptoms stopped after using antibiotics temporarily (metronidazole), only to return again and made an appointment with a D-Lactic Consultant Gastroenterologist and was diagnosed virtually on the spot, because I was responding to antibiotics.

    I was put on a 0% Carbohydrate and Simple Sugar diet. Even small amounts will cause symptoms. 64 hours or more will stop symptoms if the diet is adhered to. The diet should be adhered to for at least 6 weeks and all foods checked for Carbohydrates and Sugars. I still make mistakes and the diet is hard to adhere to, but the benefits are astounding if you fall into this category!

    Please pass this on to all who you feel may benefit. Anyone who responds or whose symptoms decrease after using antibiotics may benefit and the diet is not dangerous except for people who need high levels of Carbohydrates such as Glycogen Storage Disease. But please check with your doctor before starting any diet to make sure it is appropriate.

    Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
    1. JOHN R. SHEEDY1,
    4. PAUL R. GOOLEY1,
    5. DONALD P. LEWIS3,
    8. HENRY L. BUTT5 and
    +Author Affiliations


    Next Section
    Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5×107 cfu/L and 9.8×107 cfu/L respectively) were significantly higher than those for the control group (5.0×106 cfu/L and 8.9×104cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from 13C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.

  8. Avenger


    Dear Jody,
    Dr. Sarah Myhill has started a campaign to contact MP's concerning abuse in ME/CFS.

    I was badly abused by a number of doctors who ignored me even when I had breathing difficulty, seizures and periods of confusion. I had severe ME/CFS later diagnosed as D-Lactic acidosis.

    I was given a false psychological diagnosis to cover the symptoms and then ignored during traumatic painful episodes which looked much like Jennifer Bria. I had breathing difficulty like suffocation, muscle pain and weakness.

    I am now receiving treatment and the psychological diagnosis has been stated in my records as misdiagnosed.

    I want to tell my story and make others aware of D-Lactic acidosis which is identical to ME/CFS and may be one of the causes of neurological symptoms in the worst affected.

    Is there anywhere that I can send my story where it can be viewed by the most ME/CFS?

  9. Jody

    Jody Senior Member

    Hi Paul

    Sounds like you've been through some pretty severe times. I don't know where to recommend for your story to get seen by lots of viewers. Anyone else have some suggestions to offer?

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