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

Informing "CFS researchers" that NOT A SINGLE CFS RESEARCHER EVER LOOKED INTO THE INCIDENT THAT STARTED CFS has NOT had the effect of inducing a "CFS researcher interest response"

This can be taken as extremely compelling evidence that NO so-called "CFS researchers" ever had ANY INTENTION of "solving CFS" as they so often claim.

They must be total hypocrites.

So say I, Erik Johnson, member of the original CFS cohort.
-------------------------------------

Jeri McClure Kurre 2012 CFSAC testimony.
http://www.youtube.com/watch?v=EbcR9f7hwow&feature=player_embedded



Let me make something perfectly clear. The illness entity known as CFS, based on an outbreak of ME Plus, has never been fully investigated by
anyone. Not one researcher has examined all of the evidence that caused the creation of this syndrome. NOT A SINGLE ONE. After nearly 30
years. This is a disgrace of epic proportions. A disease that has brought brutal,relentless suffering to now millions of people and yet we have
evidence that has been around since the inception of the syndrome that has never been examined.

1 like, 0 dislikes
Posted by Erik Johnson 1 on 12/10/2016 at 9:20 PM

Re: “Weird Pittsburgh: Moldy Cheese, real public toilets and a pile of body parts for just $10

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Posted by cuzosubi on 12/10/2016 at 12:00 PM

Re: “Pittsburgh City Council takes step to protect LGBT minors with conversion therapy ban

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Posted by cuzosubi on 12/10/2016 at 11:59 AM

Re: “Local cyclist takes on the Dirty Dozen in weight-loss journey

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Posted by cuzosubi on 12/10/2016 at 11:59 AM

Re: “350 & Counting

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Posted by cuzosubi on 12/10/2016 at 11:56 AM

Re: “In wake of controversial shows, theater artists gather to discuss equitable casting

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Posted by cuzosubi on 12/10/2016 at 11:53 AM

Re: “In wake of controversial shows, theater artists gather to discuss equitable casting

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Posted by Tabor Aadwin on 12/10/2016 at 11:26 AM

Re: “350 & Counting

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Posted by Tabor Aadwin on 12/10/2016 at 11:26 AM

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

Thank you Rebecca for an informed and well researched article on ME/CFS.

1 like, 0 dislikes
Posted by Cameron DeVries on 12/09/2016 at 12:24 PM

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

Stefanie sleep above 8 water veins. 5 WVs across her abdomen, 3may across her leg. If she move good place and escape(strong electromagnetic radiation ) and massage ears fingers neck and toes, she will be healthy.

Posted by Kon Joo Lee on 12/09/2016 at 8:44 AM

Re: “Local cyclist takes on the Dirty Dozen in weight-loss journey

Tell us more about these sub-5-lb bikes that most of the riders had.

2 likes, 0 dislikes
Posted by Andy S on 12/08/2016 at 12:24 PM

Re: “Weird Pittsburgh: Blaming the bartender; like a house afire; naked ambition in Bradford

He spent four years in prison...in lieu of an attempted murder charge.

Posted by None on 12/08/2016 at 2:28 AM

Re: “Local cyclist takes on the Dirty Dozen in weight-loss journey

What Mr. Sullivan accomplished and will accomplish next year is quite remarkable. I finished my 4th DD on a 25 year old bike with extra weight from bike racks etc. but even my heavier bike is not anywhere near as heavy and limited as the Healthy Ride Bike (which must be more utilitarian and durable for its purpose). Many of us cheered him on as he climbed hill after hill. After about 5 hills we were amazed at his fitness and determination. Some people give up after 1 or 2 tries on Canton Ave. but Mr. Sullivan tried it at least 3 times. It's a technical hill and one he will conquer next year. It will be a challenge to finish the whole race on the Healthy Ride bike, but I believe he will do it next year if he keeps riding like he is. I must also say his recognition of the spectacular views and beauty of city neighborhoods that are often overlooked is refreshing to hear. There are little adventures out there to be uncovered on a bike in this great city and Mr. Sullivan sounds like he's experiencing them all the time. I'd say he is a true adventurer/explorer. One does not have to climb Everest to take on an adventure. Sometimes the adventure is right in your backyard or maybe your street. Hats off to Mr. Sullivan!

3 likes, 0 dislikes
Posted by John Joyce on 12/07/2016 at 9:15 PM

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

Thank you Rebecca for posting your story. Time has come to address this illness. 31 years ago when many of my College Abroad Study Program fell ill together overseas, there was not yet the resources available to get a grip of the nuance of what was going on after the initial infection slipped away. The situation is different now. We have the technology but seem to be missing the good will and dedicated effort of the institutions. It seems to be easier for too many within the medical community to say sorry no cure, no treatment, next patient please. This needs to change NOW. There is no longer a valid excuse for public health officials not to lead a dedicated charge. There is also no longer an excuse for friends, famlies, and neighbors to sit on their thumbs. Get off your duff and join the fight, if you can not, why not!

2 likes, 0 dislikes
Posted by Loetta Vann on 12/07/2016 at 10:03 AM

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, 1 dislike
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

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