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Comment Archives: stories: News+Features: News

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you, Rebecca, for shining a light on the millions of people suffering with this awful disease. We need so much more of this type of coverage to pressure NIH to step up and fund research for its citizens who are suffering this terrible nightmare.

2 likes, 0 dislikes
Posted by Adriane Tillman on 12/06/2016 at 8:46 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

The good news is, these patients dont die. The bad news is, these patients dont die, says Davis. They really wish they would die, but they cant. And many of them commit suicide.........i 'v been bedridden 4 yrs. i am unable 2 speak, this quote is priceless; it sums up what every single severe sufferer feels, every single day, but no one dare admit. i am not depressed, tho i dream of leaving this broken body every single day. nothing else puts a smile on my face. nothing.

1 like, 0 dislikes
Posted by otherworldly on 12/05/2016 at 1:19 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you for this thorough and well-written article. I would like to point out that there are tests doctors can use *today* to help diagnose this disease and demonstrate an individual's degree of disability.

A Cardiac Pulmonary Exercise Test (CPET) performed two days in a row dramatically demonstrates a person's inability to generate and properly use energy. It is based on 1940s technology, yet it is unavailable to ME patients due to physician ignorance and prejudice.

Like Stefanie, many patients suffer from orthostatic intolerance (OI). This can be diagnosed by any doctor with half a brain, a blood pressure cuff, and a watch. Simply measure heart rate and blood pressure while supine, and then while standing, making measurements at the one, five, and ten minute marks. More thorough testing can be done on a tilt table - another low-tech device that has been around for decades.

The various forms of OI *can* be treated, thereby improving a person's symptoms and ability to function. But first one needs to find a doctor that understands ME is a physiologic disease, and not some kind of mind-magic psychosomatic disease caused by thinking the wrong thoughts. In my case, after a dozen years of illness, I'm still looking for a doctor who will actually try to treat the disease instead of telling me my illness is "mostly psychological".

3 likes, 0 dislikes
Posted by jimells on 12/04/2016 at 12:40 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

As far as any lab work done mine has always shown problems. First labs done 15years ago I had 5 different active viruses, low natural killer cells and more that I can't recall. Labs done just 4 months ago show 3 active viruses, and more. Sorry brain fog bad today. But there are tests that can show abnormalities. Otherwise good article. I was part of the demonstrations in San Francisco on September 27 and have been bed/housebound since then. It was too long of a trip even though I was able to sleep in the RV for 4 hrs. But it turned into a 12 hour day. I've had ME for 20yrs but it took 5years to diagnose. Must go back to bed. Best wishes for all who have this devastating debilitating disease. I've often felt like throwing in the towel.

3 likes, 0 dislikes
Posted by K Mullins on 12/04/2016 at 11:18 AM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you for stating our plight so clearly, Rebecca. I have suffered from ME/CFS and at the hands of uninformed medical personnel for 35 years. I am blessed to see a very caring expert now, but there is no specific treatment or cure due to lack of funding for even minimal research. I am in the severe 25% range, am home bound, and my disability is no longer invisible.

6 likes, 0 dislikes
Posted by Jan Boyer on 12/03/2016 at 9:44 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

This is such a great article! Thanks for an accurate portrayal of how disabling this disease can be. This was a great quote. The illness is characterized by post-exertional malaise, which is a severe worsening of symptoms after even minimal exertion. For example, the exertion can be a minor physical activity, such as walking; or a mental activity, like reading or writing. As Dr. Davis pointed out, one of the most frustrating things about having this disease is that people assume its just about being tired all the time.
Thanks also to Stefanie for being willing to share her story. As a patient I find that its a strange mix of heartbreaking and encouraging to read about the struggle of others. Its so true that we patients just want to be heard, respected, and helped.

5 likes, 0 dislikes
Posted by Darlene Jessen Prestwich on 12/03/2016 at 2:57 PM
Posted by Samuel Younghans on 12/03/2016 at 1:35 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Does anyone know what treatment Tillman's daughter is receiving?

Great article.

2 likes, 0 dislikes
Posted by Jim Schmitz on 12/03/2016 at 1:20 PM

Re: “Pittsburgh indigenous-rights advocate weighs in on Standing Rock

Standing Rock stands for a lot more than respecting the Native Americans. It starts there, as it should, but there is much more to it that is not being made public. The drinking water of this whole world is being threatened by greedy oil corporations that are the only ones benefitting from these pipelines. All pipe lines explode, sooner or later. I read that there was a big explosion on the Keystone Pipeline. There have been numerous leaks and much pollution. At some point, there will be no more safe drinking water. Then it will be too late to act. ACT NOW!!

Posted by Samuel Younghans on 12/03/2016 at 12:37 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you for this article. I was pleased to see a lot of important information regarding the stigma that continues, the significant lack of funding, and the harm of exercise for anyone who fits the criteria written by the experts. However, any discussion about ME should always include the dysregulation of the nervous system, the immune system, and the endocrine system.

Clarification about the criteria for myalgic encephalomyelitis (ME) is important. Despite various criteria written for this disease, there is a highly respected criteria and primer written in 2011 by experts to help doctors diagnose and treat ME. This criteria is known as the International Consensus Criteria (ICC) and has been recommended for adoption to help doctors diagnose and treat patients with this debilitating disease. Those who fit the ICC, must have Post Exertional Neuroimmune Exhaustion (PENE), something not every criteria requires. To learn more about the ICC go to: http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

Your subheading The good news is these patients dont die is misleading and is not born out in the experience of the patients. The higher prevalence of cancers and heart problems in this population means a higher death rate at an earlier age. Because of the devastating impact of ME, suicide is a significant issue among this population. This is often directly tied to the abuse at the hands of doctors who have, as stated in the article, used the harmful CDC guidelines.

Many of us on the front lines, can attest to the constant struggle ME patients have overcoming the stigma perpetuated by uneducated doctors and poor reporting. The difficulty finding knowledgeable doctors is a serious problem and, as mentioned in your article, the NIH has been negligent in their past response and only a change in attitude away from psychosocial causes at HHS and significant research into the biological nature of this disease will bring progress in this field.

One more thing on a more personal note: For those who are newly ill, like the persn in your story, some of us old timers recommend applying for disability as soon as possible as the process takes years. The hope being by the time the process is complete these patients will go into remission or recover and will no longer need the assistance. But, if like many of us, the disease continues they will be in the system and better prepared to thrive despite the disabling nature of this disease.

7 likes, 0 dislikes
Posted by Colleen Steckel on 12/03/2016 at 12:17 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you so much for this fantastic coverage of ME/CFS and for including a personal story of debility for others to relate to. It is rare for ME/CFS to be represented so thoroughly with fact based information. This is greatly appreciated.

I have two comments to make.

1) It is preferable to refer to ME/CFS as a disease rather than an illness. This community continues to fight a 30+ year battle for recognition of the physiological nature of ME/CFS and calling it an illness undermines that to some degree. There is a distinction - one can be ill without having a disease and one can have a disease without feeling ill.

2) In this sentence in the 5th paragraph, Unlike other illnesses, doctors have no way of diagnosing ME/CFS; tests like blood work dont reveal anything. Combining these two clauses into one sentence sends a confusing message. Its one thing to state that although we are close there is not yet a biomarker or diagnostic lab test for ME/CFS. Its another to say that blood work doesnt reveal anything. There are many blood work abnormalities. Stating it the way it is here leads the reader to falsely believe that patients have perfectly normal blood work, therefore this cant possibly be diagnosed through a lab test. Researchers at Griffith University in Australia believe they'll have a diagnostic lab test within 5 years and perhaps others are even closer.

https://www.facebook.com/notes/jan-van-roijen/mecfs-test-within-5-years/10155005236248322

Thank you again

7 likes, 1 dislike
Posted by goodellcl on 12/03/2016 at 11:23 AM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you for a thorough and well-researched article. I am very impressed.

4 likes, 0 dislikes
Posted by Holly Hill Latham on 12/03/2016 at 4:05 AM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

The amount of funding allocated for CFS/ME research is shameful at $7 million.
Obesity is funded at $931 million. MS is funded at $98 Million. HIV/AIDS is funded at $3 Billion. And it is wonderful that headway is being made on treatments for those diseases.
How can CFS/ME make progress toward a cure at this level of funding? Why isn't the research giant UPMC doing studies for CFS/ME patients?
Many of us are aging with CFS and the prospects are dismal.
It is very difficult for PwCFS to be their own advocates. We need help from outside the patient cohort. https://report.nih.gov/categorical_spendin…

9 likes, 0 dislikes
Posted by Karen Hart on 12/03/2016 at 4:01 AM

Re: “Urban Challenges: Traversing Pittsburgh can be tough for those with disabilities

Between the ADA and the FHA, the requisite laws are already in place for both housing and every type of business and government building. Every detail of accessibility for the built environment is covered in those two laws as *minimum* required standards. Some municipalities, such as San Francisco, have more stringent requirements, but that baseline already exists.

What is necessary is to have a building department that will actively *enforce* them.

ADA accessibility law is all about the built environment - which is what the building inspector should be dealing with, along with the rest of the building code.

Nothing that does not meet ADA accessibilty requirements building code should ever get a building permit to start with, and businesses (including multifamily housing) that are not in compliance must be cited, fined, and compelled to comply. It shouldn't take any new laws, just a directive to the building inspector.

ADA is part of the building code in every inch of this country. When there's a violation, or even just an unsafe condition of any sort, it''s the building department that should be responsible for investigating and dealing with it.

I can tell you from personal experience that they do not in this town, which is shocking and unconscionable.

Wendy Hoechstetter, CAPS, Allied ASID
Shadyside

Posted by wendyannh on 12/02/2016 at 11:54 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Looking for Answers




ME/CFS was first investigated by the Centers for Disease Control in the 1980s, when 160 residents of Lake Tahoe, Nev.s North Shore came down with a chronic flu-like illness.




-----




Davis, the geneticist, was part of the IOM panel that examined 9,000 publications about ME/CFS over the course of more than a year.




-------






Davis has also been reaching out to patients who have recovered from ME/CFS. Hes asked them to send him emails about what they think they did that got them over it. But he says he received as many possible treatments as the number of emails, because patients can provide only correlational data: They usually think about the last thing they did before they recovered, but in reality the cure could be something they did two months earlier that helped them start moving in the right direction.






You would think people have done something that makes them get better. Its just possible that theyre not aware of it, Davis says. They think of it as some supplement they took, but its totally possible that theyre just not aware of what they did.

------------------------------------------------------

This strategy Julie Rehmeyer is using is based on the very first clue that started "The Chronic Fatigue Syndrome" -Erik Johnson

http://www.washingtonpost.com/national/health-science/what-is-chronic-fatigue-syndrome-and-why-arent-we-doing-more-to-treat-the-illness/2014/10/06/4cfff312-d458-11e3-8a78-8fe50322a72c_story.html?commentID=washingtonpost.com%2FECHO%2Fitem%2F1412690684-331-594







These disputes are heartbreaking when the needs of CFS patients are so great. Even the high-quality treatment I got from Klimas helped me only slightly. A year after I saw her, I heard from some patients who had significantly recovered from CFS through assiduously avoiding exposure to mold and other environmental contaminants. Although I considered the theory wacky, I was desperate enough to experiment. And for me, it worked. Two years later, I can go running, write articles and travel with my new husband. Every time I do, it feels like a miracle

3 likes, 0 dislikes
Posted by Erik Johnson on 12/02/2016 at 3:06 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

I am an Incline Village survivor and original prototype for CFS,
and I can tell you about it.

Eventually I anticipate someone is going to finally ask about the "160 at Lake Tahoe" and come back to ask questions
https://cfsuntied.net/2015/08/24/what-is-cfs-holy-grail/

2 likes, 0 dislikes
Posted by Erik Johnson on 12/02/2016 at 10:59 AM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

i have just written a long response ....but your computer can not accept it ....
i normally need to use all caps due to my cognitive impairments.

i hope you can capture it and save it .

I NEED TO USE ALL CAPS DUE TO VISION PROBLEMS.

4 likes, 0 dislikes
Posted by Patricia White on 12/01/2016 at 11:06 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

I TOO WANT TO THANK REBECCA FOR SUCH A WELL WRITTEN ARTICLE . YOU REALLY DID YOUR RESEARCH !

PLEASE EXCUSE THE ALL CAPS ....MY COGNITIVE IMPAIRMENTS & VISION PROBLEMS REQUIRE THEM TO BE USED AS AN ADAPTATION TO MY ILLNESS.

I HAVE HAD CFS SINCE THE SPRING OF 1986 .
AT THAT TIME I WAS WORKING AS A MEDICAL TECHNOLOGIST IN A HOSPITAL'S MICROBIOGY LAB .
I BECAME VERY ILL WITH A RESPIRATORY VIRAL ILLNESS WITH SEVERAL SECONDARY BACTERIAL INFECTIONS.
I WAS OUT OF WORK FOR 6 WEEKS .

FOR THE NEXT 18 MONTHS , I WOULD TRY TO RETURN TO WORK FULL TIME BUT EACH ATTEMPT ALWAYS ENDED WITH ME BECOMING ILL AGAIN .

THE COGNITIVE IMPAIRMENTS KEPT ME FROM PORFORMING MY JOB AS EFFECTIVELY & EFFCIENTLY AS I WAS ABLE TO PRIOR TO THE ILLNESS.

EACH DAY I WOULD GIVE MYSELF A PEP TALK ....
YOU WILL TRY HARDER ...BUT EACH DAY ENDED WITH ME SO EXHAUSTED THAT I COULD NOT THINK STRAIGHT AND BARELY ABLE TO FUNCTION.

I ALSO RAN THE GAUNTLET OF DOCTORS , SEEING ONE SPECIALIST AFTER ANOTHER .
FINALLY ONE SAID , " I CAN SEE THAT YOU ARE ILL ,
BUT I DON'T KNOW WITH WHAT "

HE REFERRED ME TO AN INFECTIOUS DISEASE DOCTOR.
I WAS DIAGNOSED AS HAVING THIS "NEW" ILLNESS
THAT THEY WERE CALLING 'CHRONIC FATIQUE SYNDROME'

THE DOCTOR SAID I WOULD NEED A TOTAL LIFESTYLE CHANGE TO HAVE ANY HOPE OF RECOVERING ....
I WOULD NEED TO TAKE A MEDICAL DISABILTY LEAVE OF ABSENCE AND MOVE BACK HOME TO LIVE WITH MY PARENT'S .

I FELT BETRAYED & ABANDONED BY MY PROFESSION AND OTHER MEDICAL PRACTIONERS .
I WAS HUMPTY DUMPTY AND THEY COULD NOT PUT ME BACK TOGETHER AGAIN .

I WAS TOLD THAT I WOULD NEED 6 -12 MONTHS OF TOTAL REST TO RECUPERATE .
THAT YEAR TURNED INTO ANOTHER , THEN 5 ........

LIKE MANY OTHERS , I TURNED TO "HOLISTIC" HEALTH CARE PROVIDERS .....
THE RECOVERY PROCESS WAS SLOW AND NOT CONSISTENT , WHAT GAVE ME IMPROVEMENT ONE MONTH DID NOT WORK THE NEXT .
I WOULD HAVE RELAPSES EVERY ALLERGY & COLD/FLU SEASON .

I DID EVENTUALLY RETURN TO LIVING A LIFE AT A PART TIME PACE , BUT I WAS NEVER ABLE TO RETURN TO WORK.

IT IS NOW OVER 3O YEARS SINCE MY ONSET .

I HAVE LIVED THE LIFE OF A RETIREE FOR THE LAST 10 YEARS, EVEN THOUGH I AM NOT YET 65.
OTHER HEALTH ISSUES HAVE CROPTED UP AND I FELL LIKE I AM A GERIATRIC PATIENT .

I AM GLAD YOU HAVE BROUGHT TO LIGHT THE NEED OF THE NIH & CDC TO PROPERLY ADDRESS THIS ILLNESS AS A 'REAL' ILLNESS .
WE ARE STILL WAITING ON THE NIH TO FULFILL THIER PROMISES OF INCREASED FUNDING POST LAST YEAR'S IOM REPORT .

HOPEFULLY WITH MORE AWARENESS OTHERS MAY ALSO SEE THE NEED TO HAVE A BETTER UNDERSTANDING OF IT'S DEBILATATING EFFFECTS IT HAS ON A PERSON .

I HOPE THAT UNDERSTANDING TURNS INTO A GROUND SWELL THAT DEMANDS THAT THE MEDICAL COMMUNITY
LOOK AT THIS ILLNESS WITH A NEW OUTLOOK .

THANK YOU AGAIN FOR YOUR WRITING THIS ARTICLE .

PAT

6 likes, 0 dislikes
Posted by Patricia White on 12/01/2016 at 11:04 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Thank you so much Rebecca, this may be the best article on ME/CFS I've ever read. Linked it all the places telling friends if they want to understand it better, they should read this. And thank you to Stephanie and everyone else who used their hard-earned energy to help bring our story to the world. <3

7 likes, 0 dislikes
Posted by Sarah Stanton on 12/01/2016 at 6:11 PM

Re: “Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

This is a well written article that explains what little is known about ME/CFS and how difficult it is to live with the condition. My symptoms are very similar, in that I don't experience much pain like many do.
The most important thing is to accept that you have it and make the best of your life.

6 likes, 0 dislikes
Posted by Terry G on 12/01/2016 at 2:48 PM

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