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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Design a Brochure

Discussion in 'Action Alerts and Advocacy' started by starryeyes, Dec 16, 2009.

  1. starryeyes

    starryeyes Senior Member

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    Brochure: This is a work in progress and is subject to change

    [​IMG]

    Not All Disabilities Are Visible
    Chronic Fatigue Syndrome
    is one of many invisible illnesses.


    Looks can be deceiving. People with CFS
    may look well but they can be in intractable
    pain and often experience many
    debilitating symptoms of illness such as:

    Orthostatic Intolerance
    Immune System Impairment
    Neurological and Cognitive Issues
    Gastrointestinal Issues
    Cardiovascular Problems
    Breathing Difficulties

    In CFS the body's cells do not produce
    enough energy to function properly
    which causes a myriad of symptoms,
    many of which are crippling and disabling.

    Studies show that CFS patients can
    experience a level of disability that’s equal
    to that of patients with late-stage AIDS,
    patients undergoing chemotherapy, and
    patients with Multiple Sclerosis.

    For more Info visit:
    http://www.cfids-cab.org/MESA/ccpc.html (Canadian Definition of CFS)

    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
    Note: I'm trying to keep this one to something we can hand to people and cops on the street when we use Handicap Parking and that we can leave on the dashboard of our car. We're trying to keep this one short and simple. We can also design others as well for other purposes.

    I think this may be pretty close to done. I'd be really happy to have this to hand out when I'm able to be out in the world. What do you all think?


    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

    Okay you smart, creative people. This is a thread to see if you all want to come up with one- to two-page brochures about ME/CFIDS that we can hand out to people and the police who try to arrest us for parking in Handicap Zones, and to our doctors, nurses, dentists and family and friends.

    This doesn't need to be a contest. I'd love to have many different brochures to suit my many moods and needs on any given day, how about you? The color for ME/CFIDS is blue by the way. You could leave one of these on the dashboard of your car when you park too. :)

    The perfect brochure for me is actually just one or two page(s) about 4 inches across and 8 1/2 inches long on thick paper that you can just stick in your glove box and that has a picture at the top and some bold words that stand out. I'd like it to be a quick, easy read with a bit of information that tells how CFS is a crippling illness.

    Lets hear more ideas. And also, ahm... does anyone know how to get brochures made cheaply? I know places like Kinkos will make them for us but I think they charge a lot. Maybe the CAA can help us out and they could also be the distribution center for us.

    [​IMG]
     
  2. Dr. Yes

    Dr. Yes Shame on You

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    Hey "teej" :)))

    Coincidentally, I just had a crappy experience today that underlines what we were talking about the need for our own brochures/info for professional "caregivers".

    Some background: I got put in this nursing home when I contracted three serious infections in three weeks (requiring two hospitalizations) at an "Adult Home" in Queens, the last being pneumonia. Naturally those caused a lasting crash in the ME/CFS overall. The nursing home is in a very woody area and my allergies have worsened - these (incl mold allergies) seem to worsen the whole ME thing, and allergic asthma/COPD that limits what I can do physically, too.

    Plus I get way too little sleep, esp. lately, due to all the racket they make here esp. from the early morning onwards. I haven't been able to try even mild physical therapy since a big crash (allergy-related) in the spring. I have been pushing to have these situations improved since January. Nada.

    ANYWAY...earlier today a whole bunch of people walk into my room while I'm trying to sleep (late, of course, due to a sleep cycle shift thanks to their constant noise..): it was my "care planning team" which includes the social worker who knows zip, the physical therapy genius who thinks I'm just afraid to leave my room and want to remain sick, the dietician who I've begged for months to arrange for better food (given my GI probs) and doesn't seem to mind that she does nothing, a Recreational Therapist who thinks I can do better if "I just will it", and a couple others who can't pronounce my last name (which they think is my first name).

    I was bombarded by all of 'em about the fact that I am "just staying in bed" instead of going to the gym (which is right near my room, hence a lot of the noise) and exercising. (I should mention that I had been bedridden for the last several years and only last fall had any improvement, now mostly erased). I was extremely annoyed, seeing as I'd already had this conversation with each of them separately.

    When I told them that I would love to exercise, and had pushed for it myself earlier but had it cancelled by my insurance, they said: "because you weren't meeting their goals."

    When I told them those goals were for a person of otherwise regular health with an injury, not a disease, they said "well, that was then, but you haven't tried again since spring."

    When I told them (again) that I've had a relapse/crash in CFS since spring, and its been downhill since then, they said: "So what you're saying is 'this is as good as it gets for me, and I'm just going to stay in bed the rest of my life'?"

    When I said nooo, I would like nothing better than to get out of bed, but as long as I'm in a place where I can't sleep, can't eat well, have no treatment for CFS or other symptoms, and live in a high-allergy environment, I can't improve, they said "well that's going to happen to you at any nursing home..Why don't you just try? Build yourself up gradually. The more you push, the stronger you'll become."

    I told them "Chronic fatigue syndrome places absolute limits on what you can do physically at any given time; pushing beyond your limit, as I've told you all before, causes "-- then I explained PEM and relapses yet again, and told them they don't know what it's like to have CFS. Then they chorused "Oh, yes we do.. nobody here is minimizing your illness.." I also told them about how many, many people with CFS are bedridden or at least unable to exercise, not through any choice of their own. The response: "But we don't want you to end up like them! That's why we want you to push yourself! You have to try!"

    At this I started to really loose my cool - which I don't know how I've been able to maintain for the last year or so - and told them that frankly it really pisses me off when people who don't understand the disease or how hard people struggle with it just assume that they know better than patients who've had it for years or decades and that those patients must not be "trying hard enough".

    As it got more heated, they said "well this is going nowhere" and I got some of those exasperated-with-you looks and they turned to leave, but asked if I had any questions for them. I was too burned out by this time to say anything intelligent, but I said yes what about an aide assisting with the wheelchair. I don't know about you guys, but I haven't been able to push a wheelchair myself without severe PEM since early in ME/CFS, when I was ten times stronger than I am now - not even after PT. (Wanted to start a thread on that, actually..).

    The mindless, circular response was "well, if you go exercise, we could get you strong enough!" I told them I have a doctor's note (from an outside rheumy) explaining that I need wheelchair assistance and that PT would not be be enough to allow me to do it thanks to CFS. They conferred but then announced that it would be impossible for the staff to accomodate this need. (At a nursing home!?) I said but I'm trapped in this room, then.. that can't be healthy!! No response, and then they beat a retreat, advising me to still "consider the suggestion of physical therapy."

    I was briefly furious, but I'm so used to this and so worn out that I just managed to swallow it. This kind of treatment is so familiar to a lot of you, I know. For me, it's become almost daily (though not always with several people scolding you and looking at you like a self-destructive headcase at the same time... still, I've gone through much worse.)

    My point is this can, and I'm sure does, happen to any ME/CFS patient who is forced into a situation or system where s/he is dependent on others for housing and other basic needs. I don't have the right word for it.. not "humiliating", though that too... But it leaves an impact, and the anger inside just builds, and I hate being angry (and I've noticed that it really is toxic!).

    I'm sure I'm not the only one who's been in a situation like this; there must be others out there who find themselves broke and with no one to take care of them, and I guess they wind up in the same boat. But that is where I think our information and at least some of our advocacy is best spent -- PROPERLY educating the MAJORITY of professionals about the real ME/CFS and how they must (and must not) deal with us if we wind up in their hands.

    I was wondering what to put in a brochure, teej, but this reminded me of the physical disability part of ME/CFS, and the shocking ignorance and denial that we face daily about it by people who we depend on. Simply mentioning that "some patients are bedridden" while still advocating graded exercise is ridiculous; someone has to get it through to these folks specifically what our limitations are at different levels of illness and back it up with doctor testimony and research findings.

    I think we'd have to emphasize the unquestionable physical reality of the disease, the injustice and stupidity of the "malingering" label, the specific physical limitations and requirements, and a demand (no more "please, sir") that those charged with care of those with ME/CFS research the disease before they claim to know what's best for us - as surely they would do for any other disease they were new to. (Would they allow a young member of their profession to come up with therapies for a person with MS, or lupus, or HIV if he had never read about those diseases?)

    Well, that's my first rant, of sorts. Actually holding back a lot, but gotta go to sleep; appointment with a crappy cardiologist tomorrow. Who keeps recommending exercise for my NMH (doesn't care about the rest). :mad:
    Sorry I couldn't brainstorm much, teej; this really is a terribly important thread; it's not just about brochures themselves as I see it, but about how we can change how we are treated and what we want to educate them about. When I tried to get a brochure or any info about CFS, this was the reason.

    -K
     
  3. Dr. Yes

    Dr. Yes Shame on You

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    Well, one minor idea: for doctors/ health professionals, maybe we may be able to super-condense the Canadian Consensus literature, or do something along their lines (with stronger language or advice)? Nancy Klimas and a few others were part of that group, and perhaps they would allow us to cite them, etc... though I mention that Klimas herself has made somewhat unclear statements about exercise and endorses CBT (which form of it, I don't know).

    Really sorry about the rant :eek:... and all the text :eek::eek:. Never got to do that online before.. and it seemed like an appropriate forum for it; I hope something constructive can come out of it?

    I dunno. Gotta see if I can sleep this @#%& off. Have to get into it again with the social worker on Friday.. I really dread having to even talk to people about this.

    -K

    btw, I remember feeling almost ashamed everytime I uttered the words "chronic fatigue syndrome", esp the "fatigue", while I was being bombarded. It's like I wince as I say it, because I can see them go blank or grimace. I HATE that name. Though obviously changing the name alone won't stop people from acting like jackasses towards us. Someone should do a study into the causes of that phenomenon. Attention Leonard Jason!
     
  4. gracenote

    gracenote All shall be well . . .

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    I'm hearing you, Dr. Yes.

    Dr. Yes,

    I'm here in California pretty crashed out lying on my couch reading your words. I think this forum, and even this thread, is the perfect place for you to express your frustration at being so unheard and not believed and not seen. I just want you to know that I hear you, right now, and that you are not alone. And I am so very sorry that you find yourself in a situation where you have so little control and so little respect offered to you. I wish it weren't so. And I hope we can help to change it.

    I think what you shared is brainstorming, and I think we can get some useful ideas from it.

    I hope you rest well tonight.

    Gracenote
     
  5. Countrygirl

    Countrygirl Senior Member

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    Hello Dr Yes :)

    I have just read your post.........what can I say??? Except that I am appalled, heartbroken and furious at the position you are in. It's a disgrace that you should be treated like this...that any of us should be treated like this. Crazy as it may sound, we are too ill to cope with a hospital/nursing home environment. I have recently been in your position ...again. I am alone too and I dread the threat of medical attention of any kind because, in their ignorance, the medical profession from therapist to consultant try to inflict treatment regimes on me that plummet me into a severe relapse.

    Once, I spent three months in a hospital ward for nursing care. The nursing staff made it very clear that they did not believe in the 'shirker's' disease. Although just about bedridden they bullied and shouted at me. They deprived me of food....if I couldn't walk to the dining room I couldn't eat. When I really pushed myself to do so, I would collapse onto the table because I couldn't sit upright. When I collapsed in the corridor the nurses just walked over me... and forbade the other patients to help me up. Oh dear. this is sounding so depressing......I'm sorry. :eek: Bad memories - must let go of them. Not good for the soul or the body.

    How do we protect ourselves from the people who have such power over us, especially when we are at our most vulnerable? Education, education, education... Fresh Eyes, we need your brilliance...your ideas are sheer genius. Let's blat (is there such a word??)the planet with your wonderful slogans.......The medical ignorance, negligence and abuse surrounding this illness has to stop! (especially bad here in the UK as CTOT knows only too well, as do I)

    We are rooting for you, Dr Yes.

    With very, very best wishes and....do you mind...if I send you a hug? :eek:
     
  6. starryeyes

    starryeyes Senior Member

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    This is appalling treatment and we need to get these stories out there. I am so sorry for all you are going through Dr. Yes and Countrygirl and I can easily see myself in your shoes. (((((HUGS))))) to both of you. It is appalling to see how we're being treated in public medical settings. In that respect we have it just as bad as they do in the UK.

    I don't really think that pamphlets would work in that situation though. I think small booklets might work better for that and that could be another project we can work on developing. I think it would be easier for us if we were to develop that in another thread. A booklet like this would be something we could give to our doctors, nurses and dentists. We'd still want to keep it short and readable but more complex than a pamphlet.

    Pamphlets would work for strangers who accost us for parking in Handicap zones and for the police who try to arrest us. I think for this we need something short and to the point with bold words that can be read if you leave one on your dashboard.

    Btw, I have the perfect line for handing out a pamphlet too. You can say, "Educate don't discriminate," when you hand it to them.
     
  7. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina
    My god, Dr Y. I really don't know what to say. I have been expressing my horror at what people are experiencing in the UK, and here's basically the same thing happening stateside. It makes me really...well, I wanted to say sad, but the more I think about it, it makes me really angry.

    I am starting to see this as mainly a human rights issue.

    I am nowhere near as ill as many people here (I thought I was pretty ill until I started hanging around here...:eek:) so I'm trying to do what I can. Perhaps grassroots advocacy will make a difference. It worked for ACT UP. Hang in there.

    OK, people - sounds like we need 2 very professional-looking informative pieces, one for the casual interaction (eg parking lot) and one to actually educate professionals or people who need an in-depth understanding. Let's compose and I will design.

    CFS/OUT!
     
  8. Countrygirl

    Countrygirl Senior Member

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    Thank you, teejkay


    Hello teekjay,

    Thank you, thank you for your hug. :) :D It did me the power of good.

    Can we, perhaps, have a group hug?....... the people here are very special, very talented and absolutely brilliant.

    Sending hugs all over the forum........


    P.S. Not the place I know, but I can't help wondering what has happened to CTOT....I'm worried that he has been really hurt. He has had a very rough time........I don't know the full story, but I do know how traumatised he will be by the way he has been treated by the medical profession. Now he may feel very rejected .......Anyone, any news.......?? If he is reading this, I'm sending him a hug, too.
     
  9. Countrygirl

    Countrygirl Senior Member

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    Oops.Sorry teejkay.

    Apologies for changing your name, teejkay. I will write it out a hundred times as a punishment.....(guess what my job was in my previous existence.)
     
  10. Andrew

    Andrew Senior Member

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    For doctors, I have been trying to purchase copies off the Canadian Consensus Overview. My first email went unanswered. I just sent a second email.
     
  11. Koan

    Koan Be the change.

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    :mad:

    Dear Dr Yes,

    So wrong. So deeply and horribly wrong. I imagine a bunch of us staging a rescue :cool: But, when I imagine us shambling into the facility from the parking lot we have to keep stopping to sit/lie down... we get back up again but it takes some of the scary out of our approach :eek:

    It would be so easy to provide much cheaper housing and care for PWME/CFS than this. The fact that you pay for all that noise and chaos, that would keep anyone with ME/CFS so much sicker, just makes me crazy :(

    And, yeah, I cannot understand how anyone with ME/CFS can possibly use a wheelchair that has to be powered with our arms which are, usually, weaker than our legs!!!

    :mad: Grrrrrrrrrrrrrr! :mad:

    Something really must be done about this.

    It is amazing to me that you are the man you are while enduring the situation you endure.

    You are my hero.

    You really are!

    Koan
     
  12. Koan

    Koan Be the change.

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    Dear Countrygirl,

    I am so sorry you had to endure that torture. I am so happy that you are free of it now.

    We must keep moving forward so that it can never happen to you, or anyone, again.

    We are many!
     
  13. anne_likes_red

    anne_likes_red Senior Member

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    LOL.

    I was thinking rescue too. I don't know what I could do from New Zealand....but...well I'd think of something!

    Dr Yes,
    I'm so sorry. Only people who get it get it.
    "If we could get you in the gym?" Waaaaaaaah!?

    A big, heartfelt HUG ----> your way - because although I don't feel I have adequate words, or answers I DO get it (your illness I mean....not the lack of understanding and compassion)....
     
  14. Lelvina

    Lelvina ex-Bookworm

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    Dr Yes: That sounds beyond horrible. I am so sorry. :(


    As far as Brochures go:
    What about brochures explaining/for the different levels of CFS? Going off of Bell's scale. One for zeros, one for 1's, and so on. The zero/1/2/3 etc. brochures could say what the patient can do, can NOT do, and what is needed -- with proper medical quotes, from doctors etc.


    And maybe a brochure on medical needs (explaining what's wrong) -- mitochondria, and so on.
     
  15. _Kim_

    _Kim_ Guest

    I sent Dr. Yes a PM earlier to see if I can visit him for Christmas - well, not for Christmas, but on or near Christmas day. I want to bring food, supplements, and earplugs and a dozen copies of this article:

    A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS


    He has been offline since - maybe they've taken him off to the PT room and are making him do pushups so that he can wheel himself around in the wheelchair soon.

    I don't know if a visit is what he wants (Yes, Dr. Yes, I'm talking about you), but I'd like to go. My family is getting together on Dec. 27th, so on Christmas day I have no plans/no other invites.
     
  16. Countrygirl

    Countrygirl Senior Member

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    Dear Koan,

    Thank you so much for your kind words. It has been very tough, and still is for many. I've just had a phone call from someone who has been given my number....... she's been v. ill for 20 years, has just been made homeless by her partner, has no medical support, has been refused benefits and is desperate and very distressed. Homeless and v.ill for Christmas! What can I do for her??? I'm doing my best, but without medical validation all avenues are closed for her. The GPs are the gatekeepers for all types of support and that is not available for people without belief in - or understanding of - this miserable lurgy.

    I do enjoy reading your posts. They have helped me through a very poorly two months. I send you a big hug and a load of thank yous.

    Best wishes,

    Countrygirl
     
  17. Koan

    Koan Be the change.

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    My dear Countrygirl,

    We are in this together. I can't imagine what it was like to be ill and alone before the internet. Well, I can remember, actually :p , but hope was easier to come by then than it has been any time since... until Oct. 8, that is.

    I am Irish, born in London, raised in Canada and feel a strong kinship with all of you. There but for the grace...

    I can't imagine how panic stricken your friend must feel. I can't imagine how you must feel either. Most people don't know how close they are to disaster but we do. I have sometimes thought, in my darkest moments, of what I would do if I lost my disability stipend which keeps me sheltered, fed and online. I don't know how people with this illness can stay alive when homeless. I doubt I would be able to keep despair at bay for very long.

    But, 2010 looks like a whole new world for us. The end of uncertainty would be enough, frankly, to change everything. But, I really think there is reason to be optimistic that we will see much, much more. WPI, Dr. Kerr and others have not given up on us. How remarkable that is! What a Christmas miracle it is that there are people who could have walked away but did not.

    Hang in there. Things are going to get much better. We will see it.

    We will all be there together.

    peace to you, my dear friend,
    Koan
     
  18. Koan

    Koan Be the change.

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    Oh Kim, that would be fantastic! How great would it be to meet DrYes! And, how great would it be to meet Kim!

    Will the Christmas miracles never stop! No, they won't!

    :D
     
  19. Advocate

    Advocate Senior Member

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    I hope that works out!
     
  20. Marylib

    Marylib Senior Member

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    Tears

    Dr. Yes, Countrygirl,

    Trying not to cry as it makes me more exhausted. But it is not easy having read your posts. How terrible, how lonely, how awful. How lucky those of us are who are able to live in our own homes.

    Darling Kim -- would be so great if you could visit him. I will suspend the switch over the holidays. :p

    Okay -- practically speaking: it would be great to have a copy of the Canadian Consensus -- for any of us. Don't know why they are not responding to email requests...I am going to look into this, as I know one of our support groups in NZ was able to order in a few of these.

    Of course, the long term solution is coming....one way or the other.
     

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