arrow48 Comments
  1. Sue
    Aug 07 - 6:31 pm

    I’m not even shocked. Not even.

  2. Karen PT
    Aug 07 - 6:33 pm

    Hi, Just wanted to let you know that when I cut and paste the email, it copies with the background color, so it looks a little strange. If anyone knows how to correct this, please post a comment. I have tried highlighting the text then clicking on the no highlight for background color in Yahoo’s email program, but it doesn’t change anything.

    Thank you, Cort, for posting this and making it easier for us to contact our representatives in DC!

    • Karen PT
      Aug 07 - 6:38 pm

      Ok, I tried highlighting the entire body of email again, then going to text & background color icon at bottom of email. I clicked on black for text, then no color for background & it got rid of the beige highlighting. Nice to have one problem solved (:

    • Bob Miller
      Aug 07 - 7:38 pm

      It is easier to go to the PDF and Copy&Paste the template into your emails…Thank you to all who get the Fact we must Send One Message: More FUNDING for ME/CFS Now!

    • Sasha
      Aug 08 - 2:18 am

      Copy the email text, paste it into Notepad (which strips out all the formatting) and then cut it from there and paste it into your email.

    • Jocelyn Seccombe
      Aug 09 - 1:22 am

      Hi Karen PT,

      Have you tried cutting and pasting your message into a Notepad document and then cutting and pasting that back into your email? If that doesn’t work I’m sure you won’t be the only one sending a colourful email.


    • LV
      Aug 12 - 6:46 pm

      I can help–here’s how to convert any formatted text (such as text with background color, bold, embedded links, etc.) to plain text only:
      1) do a “copy” on whatever you want copied (Ctl C) 2) open Notepad and do a “paste” (or Ctl V) into Notepad which leaves you with plain text stripped of all formatting. 3) Now, copy and paste THAT Notepad text into wherever you need it.

      • Cort Johnson
        Aug 13 - 5:36 am

        Thanks LV :)

        I believe Notepad comes in every version of Windows.

  3. Charles Bohbot
    Aug 07 - 6:42 pm

    I am very ill with Chronic Fatigue Syndrome (known as Myalgic Encephalomyelitis). We have suffered with the smallest budget at CDC and NIH for decades. I am distressed to learn that the Senate Appropriations Subcommittee has cut CDC’s budget on Chronic Fatigue Syndrome research to zero, and I need you to restore it to the same level as the House bill in the Conference Committee
    I am now 70 year old and I my life has been miserable for the past 40 years and I beleive something shoul really be done for people suffering from this horrible disease

    Thank you

  4. Tally
    Aug 07 - 7:02 pm

    This is just… heartbreaking. With severity if this illness all we have left out of life is hope, and it seems everything is working to even take that away from us.

    What justification could they possibly have for cutting after what IOM and P2P have reported???

    What can international patients do to help?

  5. Donna.neversurrender
    Aug 07 - 7:06 pm

    I sent emails to the senate staffers and auto-responses. It seems they are all on vacation until Aug. 31 and by then they’ll have a boat load of email. So I am putting this in my calendar to resend, maybe more than once after the 31st. I also added in :”In contrast, Prion Disease which remains funded, effects only 1 person in 1,000,000, approximately 300 Americans a year.”. Also, someone on FB commented that one of the emails was returned as invalid. I got responses from all 4 so here are the ones I used.
    ‘'; ‘'; ‘'; ‘';. The letter on FB was different.

  6. Sarah Christie
    Aug 07 - 7:14 pm

    I am a 55 year old woman and can no longer work because of the disabling effects of ME/CFS. I have been working since I was 12 and never imagined I would have to file for disability assistance. It hasn’t always been like this. I put myself through college with two preschool age children in our home. I then continued my education after 8 years of seminary courses to be a Professional Church Educator. In 2003, after serving churches for years, Ijoined the staff of a 1200 member church. In 2011, I was struck with a severe case of Mono and influenza b. My pain was so severe, I had CT scans, thousands of dollars of labs done. All labs were normal but the excruciating pain never left and my fatigue was unbearable. In 2012, I fell and broke my ankle/leg. The pain increased again. I went from working 60-70 hour work weeks to barely 50. November of 2014 I finally had to resign the job I worked all my adult life to achieve. I am now mostly homebound, can only drive short distances, can’t grocery shop, housework, yard work, prepare a meal requiring more that 20 minutes. I require assistance for basic self care. I only leave the house for doctor’s appt. My life has been shattered by this disease because so few doctor’s treat patients like me, no reliable drugs are available, and very few research dollars are available for a disease that affects thousands of patients. Can you imagine what it would feel like to have the flu all the time? That is similar to what we feel 24 hours a day. We are too sick to testify to lawmakers and to advocate more than a few words in an email or letter. Please give the ME/CFS community hope by not only restoring research funding but increasing the dollars that can help us find a cure. Please help us move ME/CFS funding from DEAD last and get serious about research for this disease.

    Give us hope again!

    Sarah C.

  7. Jane
    Aug 08 - 12:05 am

    I have submitted request to Last Week Tonight with John Oliver to make a report on ME/CFS

    Last Week Tonight is a weekly news comedy show but it is very respected and influental. I think it would immensily help us if they reported that the Senate has cut the funding for such a disabling illness down in half.

    I left the link above. Please comment to show many people are interested in this topic. Feel free to correct me there in the comments if I wrote something you disagree with.

    It’s HBO’s site and it’s really easy to sign up, you just need an e-mail address.

  8. Amanda Varley
    Aug 08 - 12:15 am

    Surely it would make more financial sense to increase funding rather than reducing it!!! So that the millions of people who suffer from this totally debilitating illness can be restored to health and become financially productive members of the community once more. The savings in sickness and disability benefits alone would be enormous!!!! Please think ahead and deeper rather than this band-aid solution to economic juggling.

    • Cort Johnson
      Aug 08 - 6:41 pm

      Yes indeed!

  9. Helge Sverre Risan
    Aug 08 - 3:07 am

    The swindle of the peoples health continues. I really really wonder, whats their motive behind all this? It really propel my assertion that there is crime and camaraderie going on.

    • Cort Johnson
      Aug 08 - 6:42 pm

      To be honest I think it’s just ignorance. For sure it indicates they are not worried about an ME.CFS lobby. Well, hopefully now they will be more educated and a little more worried.

  10. Chris Szabo
    Aug 08 - 3:51 am

    What if we’re not in the US? I can hardly write to “my” Congressman or Senator. Any ideas?

    • Anna
      Aug 08 - 6:35 am

      Chris, I’m in Europe and writing to the four named senators. I’m presuming we can write to them anyway even if we don’t have our own senator.

      • Cort Johnson
        Aug 08 - 6:43 pm

        Yes, just write to the reps – register your discontent – and leave off your address. I think that will work.

  11. Andrea
    Aug 08 - 4:23 am

    Have you checked to make sure it’s not under SEID or somatization disorders. I’ve never seen a complete cut in funding for an illness before? It’s bizarre.

    • Cort Johnson
      Aug 08 - 6:45 pm

      I agree; It is really weird. I don’t think anyone knows what happened. I think we just know that it has happened.

      There’s only one CDC program for ME/CFS and it’s always been in this category. It would be nice if it had been moved but we would probably know about that. I think we would anyway. :)

  12. Michelle Cassar
    Aug 08 - 6:07 am

    Even though I’m not in the US, I’ve just sent an email to the 4 Senate Committee staff. After all, cutting research funding in the US seriously dampens all our hopes of effective treatment ever being developed!

    • Cort Johnson
      Aug 08 - 6:45 pm

      Thanks Michelle!

  13. Esther Siebert
    Aug 08 - 8:05 am

    I sent the following:

    I am very distressed to learn that the Senate Appropriations Subcommittee has cut CDC’s budget on Chronic Fatigue Syndrome research to zero, and I need you to restore it to the same level as the House bill in the Conference Committee. (see: pg 59)
    If anything, funding for research on ME/CFS needs to be dramatically increased after decades of neglect by the CDC and NIH.

    This year, two independent panels of scientists – the prestigious Institute of Medicine and National Institutes of Health’s Pathways to Prevention Panel – both reported that “There is an urgent need for more research to discover what causes ME/CFS, understand the mecha­nisms associated with the development and progression of the disease, and develop effective diagnos­tic markers and treatments.”

    Researchers and clinicians at our top medical schools including Columbia and Stanford are stymied by lack of funding just as promising new research needs to be followed up with larger studies. Famed virus hunter Dr. Ian Lipkin, MD at Columbia has been reduced to crowd funding online to try to raise research dollars. The decades-long neglect of this illness by our health establishment is shameful and must stop now!

    The IOM report estimated that this illness is under diagnosed and that as many as 2.4 million people are suffering from this devastating illness in the US alone at a cost of billions of dollars to our economy. The NIH spent $1 million of taxpayers money on the IOM report, and to ignore their findings and recommendations now is unconscionable.

    I have been terribly disabled by CFS for almost 30 years. CFS is as disabling as late-stage renal failure and Multiple Sclerosis. There are no FDA-approved treatments or diagnostic tests. It is too late for me but I refuse to see the children and young adults coming down with ME/CFS loose their entire futures to this disabling illness without a fight. Cutting CDC’s $5.3 million request reduces federal research funding for CFS by 50% at a time when we desperately need more scientific research.

    Have a heart and take the time to view the story of one young man with ME/CFS and show it to the subcommittee before a decision is made.

    And here is the pdf version of the print story.

    Please restore the CFS budget request and urge NIH to fund CFS research equally with Multiple Sclerosis. Thank you for your consideration.

  14. Esther Siebert
    Aug 08 - 8:12 am

    I received the following automatic response which included a phone number for the subcommittee. I suggest we pick a day after they return, perhaps the first weekday after they return, to deluge them with calls. And get other ME/CFS groups to promote making calls that day.

    Keenan, Alex (Appropriations)
    9:03 AM (2 minutes ago)

    to me
    I am out of the office until Monday, August 31, with limited access to email until August 16. If you need assistance, please call the subcommittee’s main line at 202-224-9145.

    What about September 1?

  15. Esther Siebert
    Aug 08 - 8:15 am

    I may have missed it but do we have a list of the members of the subcommittee in question? Then we could ask our senators to contact their colleagues on our behalf?

  16. Luke
    Aug 08 - 9:06 am

    I am so over having this disease….. i’m absolutley tired of this nonsense. EVERYONE SEND EMAILS AND HAVE EVERYONE…. I MEAN EVERYONE… IN YOUR FAMILY SEND ONE TOO. If your mom and dad and siblings do too it will have much more impact.

  17. Lisa
    Aug 08 - 1:01 pm

    I am devastated, depressed, frustrated and hopeless. I will send emails now and later and have my husband send some.

    I love the idea of choosing a date to call that number and bombarding them with calls. I’m in. September 1, or whenever. Maybe we should call daily for a week. God, I wish we could stage a protest in front of the capitol. I wish we had a lobbyist. And thanks to all of you outside the US for sending emails. The more emails, the more likely someone will take notice.


    • Cort Johnson
      Aug 08 - 6:48 pm

      That’s a good idea. This is indeed when we could use a lobbyist to tromp on over there and ask what the heck is going on. As someone said – it’s is really weird.

  18. David Katcoff
    Aug 08 - 2:12 pm

    Thanks for the links, etc. I sent the message to everyone. I think it’s called a Hail Mary.

  19. Amy
    Aug 08 - 3:36 pm

    Are those of us in the UK and other countries ‘allowed’ to email your senators over what is technically a U.S. funding issue? This news does, of course affect us all across the world. My life has been devastated since childhood with ME and I’m nearly 40, and the multi-site study and others mean the world to me too because we still look to the U.S. to lead the way for us all when our own government’s efforts are so pitiful.

    • Sue
      Aug 08 - 4:57 pm

      You can just sign your name and country. What weight they will put on it I don’t know.

  20. dee
    Aug 08 - 3:46 pm

    hey cort, some of us aren’t well enough to copy, paste or do much of anything but click onto a button. suggestions please? don’t even have a copier. we want to help and be heard BUT not strong enough. HELP please?

  21. Lisa Freundlich
    Aug 08 - 3:57 pm

    Hi Dee,

    Can you forward the link to a friend and ask them to sign it for you and send? Sorry you are so weak.

  22. Cort Johnson
    Aug 08 - 6:50 pm

    This is what I sent:

    These cuts are unconscionable! Over a million people in the US have chronic fatigue syndrome. Perhaps you were mislead by the name. Studies show that people with have lowest quality of lives and ability to function of any disease! This is not a minor disease. It can be an extremely debilitating disorder. Two federal reports recently called for urgent “increases” to funding for ME/CFS research – yet you have just cut that program in half!

    This is incredible….Please restore the cuts and add $10 million more to the CDC’s program. A million Americans with a disease a disease that the FDA reports that is as disabling as multiple sclerosis and kidney disease deserve better.

    Thanks very much,

    Yours truly,

    Cort Johnson

  23. Anne
    Aug 08 - 8:58 pm

    Hey Cort- You may already know this, but a few people have heard back from a staffer and they have set up phone calls for next week to discuss this issue. So hopefully we will know within a few days what is going on– obviously we should continue to email the staffers but it’s good to know there have been some responses.

    • Cort Johnson
      Aug 09 - 10:33 am

      Thanks for passing that one. Didn’t know it and glad to hear it.

  24. Margaret
    Aug 09 - 10:02 am

    I skimmed and searched the 2016 CDC budget justification and there seems to be almost nothing in it about CFS. Maybe I missed it. If not, I am less surprised by the appropriations committee’s action. Did the CDC goof? If so, maybe the CDC needs to respond to the Senate Appropriations committee.

    • Cort Johnson
      Aug 09 - 10:31 am

      Interesting Margaret….What the heck is going on?

  25. Larissa
    Aug 09 - 12:31 pm

    I sent the e-mail and added the following for a more personal touch.

    To you we are faceless individuals that you find so easy to just toss aside and dismiss. We are real people! We are wives, husbands, mothers, fathers, daughters, sons, sisters, brothers, grandmothers, grandfathers, friends. Your decision to cut funding is not just affecting us, it’s affecting all the people in our lives who are so desperate to see us get better, because we have meaning to them! We are important to them! They have watched what this disease has done to us. They have watched it rip our lives away from us. They have watched us suffer day in and day out. They and us want nothing more than to get our lives back! The only way to do that is to increase funding so that we can eradicate this terrible life robbing disease!

  26. Karl Edvard
    Aug 18 - 1:52 pm

    I did what I could and wrote to the senators.

    Dear Senator,

    I am from [my country] and have the neuroimmune disease Myalgic Encephalomyelitis (ME), also somewhat incorrectly called Chronic Fatigue Syndrome (CFS).

    It has come to my knowledge that the committee recommendation recommends the senate to remove the funding for CFS next year for CDC. I can not understand this decision at all. Actually, CFS has suffered from underfunding for decades.

    CFS is a prevalent disease. One of 300 people have it (0.4%). It causes severe disability and suffering, and the persons with it lose the contents of their life. Not only the patients themselves suffer, but also the family suffer.

    I have no clue from where the idea would come to remove the funding for biomedical research into CFS. It seems very strange that this happens in a time where it is clear that this is a severe physiologic disease that have been underfunded for decades. For example the Institute of Medicine (IOM), released a report this year that came to that conclusion.

    The burden on society (direct and indirect cost) is in the order of $20 billion (USD) yearly.

    If the funding of biomedical research was proper, then we would probably have a cure soon. It does not make sense to remove the funding. Any economist would realize that the correct thing to do is to increase the funding radically in order to reduce the burden on society. Very few investments are likely to be so profitable. Investing for example $100 million yearly during ten years for finding a cure, would represent an investment of $1 billion which would then result in a profit (lowering of burden on society) of $20 billion yearly!

    Not to search for a cure for a disease that has been proven to cause severe invalidity and very poor quality of life is inhumane and unethical.

    I supplicate that you reconsider the level of funding for biomedical research into CFS. I would suggest you to progressively increase the funding over the five next years to something in the order of $100 million yearly.

    Actually, I would prefer that the money for research into CFS is diverted into research into Myalgic Encephalomyelitis (ME) which in my opinion is a more strict and correct description of the disease.

    I would prefer that CDC use the international concensus criteria for myalgic encephalomyelitis (ME) from 2011, and view ME as an exclusionary diagnosis to CFS.

    Yours Sincerely, [my name]

    • Cort Johnson
      Aug 19 - 2:02 am

      Thanks Karl :)

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