Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment NEW YORK (Feb. 27, 2015)—Researchers at theCenter for Infection and Immunityat Columbia University’s...
9249 As we approach the end of the year, it seems like a great time to thank the Phoenix Rising team of volunteers, who do a huge amount of work to provide us with a safe and well-run forum, and who give so much of their time to make this such a fantastic place. It’s easy to take Phoenix Rising...
I just changed a few words in the article, left out a couple of paragraphs, and posted the rest as a comment: :rolleyes: Psychobabble is back! Just when you thought a stake had been driven the heart of the psychobabblers, they come roaring back, propelled this time by Dr. Edward Shorter, a writer...
Any thoughts, @Jonathan Edwards? This is basically the dataset that Mady presented last May at IiME and I have been thinking about it for some time. Analysis is not easy but I believe this result, and there are not many results in ME that I do. I think it is a genuine quantum leap in terms of...
Northwestern University law professor Steven Lubet goes public about his battle with ME/CFS http://www.abajournal.com... People suffering from the syndrome, also known as myalgic encephalomyelitis, have been treated as malingerers and met with disbelief, according to Northwestern University law...
Comments on the NYT article are now closed at a total of 581. Dr Kaufman's early and valuable contribution was easy to overlook. In gratitude I repeat it here: David Kaufman, MD California "I will assume that the first two comments are by physicians. Let's begin with a suggestion: find a doc who...
When I discover the ultimate underlying cause of my M.E and successfully treat it I will be posting a full page article on Phoenix Rising with full disclosure of all relevant facts. I would happily PAY myself to advertise the news in a national Newspaper if it could help just one other patient.
Still not sure either way about the 'SEID' thing - pros and cons there - but so much to like otherwise: ding, dong, 'CFS' is dead! clear statement that this is an organic disease, not somatization clear diagnostic criteria with PEM non-negotiable criteria are simple enough for any doctor to...
MEA response sent to the Editor of The Independent INTENDED FOR PUBLICATION Re: 'If we treated people with diabetes the way we treat those with depression, there would be an outcry'Independent: December 14, 2014 Sir Having worked in hospital psychiatry, I know that mental illness can be just...
http://www.medscape.com/v... To read the whole article, you can log in for free. Chronic Fatigue Syndrome: Wrong Name, Real Illness For clinicians, the first step is to recognize that the condition is real. "People do think it's a spectrum of disease. We've settled on that it's an...
An Opinion Editorial in the New York Times today by writer and patient Julie Rehmeyer reflecting on the IOM report Chronic Fatigue Syndrome Needs Effective Treatments - NYTimes.com TOO often, doctors don’t understand chronic fatigue syndrome. They don’t know how to diagnose it, and they...
The atmosphere on Pheonix Rising, within the IOM forum, has become somewhat unfriendly and tense since the release of the IOM report. Here are a few suggestions. Please avoid attacking each other and respect that members have different opinions regarding the IOM report. It's possible to...
Well, I went to Medscape and said I was a nutritionist/dietician (which I think I am in fact!) and posted this, FWIW. I'm not sure if you need to be a medical professional to post a comment, but WTH: Pardon me, doctors, but your (willful?) ignorance is showing. If you read the IOM report...
Someone whispered me in the ear that Haukeland University Hospital (Fluge and Mella) is publishing (or finishing) a new pilot study with an unknown drug in 6 weeks. They told that the drug works quicker than Rtx. They didn't want to reveal what it was. Any suggestions? They have previously...
A brief time line. I started seeing Dr Montoya in 2007 where I was treated with Valcyte. After 7 months, I quit the drug because it was making me worse. I believe this was a result of starting with too high a dose and never recovered until I stopped the drug. I improved enough to return to work...
Have you considered writing a reply in an article? I have got involved, with some others, in trying to produce something a bit more intelligent than what is in the Lancet. I am stuck in a 'dough-proving' phase at the moment but hope to focus on baking next week. Producing something more...
I managed to save a copy of all the comments yesterday, when 56 comments had been posted. Some well-known advocates made comments, including Dr Enlander & Toni Bernhard. You can download the attached PDF file, or I've made it available to view online as well: https://drive.google.com/...
We have received a letter from Drs Lipkin and Hornig at Columbia's CII. 9890 This letter can also be viewed as a PDF, here: https://drive.google.com/...
Apologies if this has been posted elsewhere There's some pretty interesting genetic work underway, or even being prepped for publication, from OMI. I came across in the ME Global Chronicle latest edition (pdf download), or see the OMI page. The focus is on genetics, and some very big studies....
This letter to the IOM committee, about the needs of severely ill ME patients, was signed by nine severe patients. We understand and respect people's reasons for boycotting comments to the IOM, but we felt we had to protect ourselves from the CDC's harmful, pro-exercise guidelines, which were...
I haven't yet had time to read this IOM report in any detail - so it's possible that these comments may be a bit too critical of what is being proposed regarding nomenclature. CFS/chronic fatigue syndrome is an absolutely dreadful name for a serious and debilitating neurological illness. It is the...
I'm glad he hates the report so passionately. If he hates it that much, the committee must have done something right with their report! And you know what happened to dinosaurs in the end? They lived in an environment in which they thrived, and when the environment changed, they died out. First...
Well. Instead of going private, I went public, from my Facebook page. I tried to post on the Uof T page but it didn't appear. So I tagged them instead. I will write a blogpost and tweet that as well. University of Toronto professor writes hate blogpost, insults Institute of Medicine. Yesterday...
I'm sure that this article will eventually get pulled, because it is so candid and gives too much exposure the points of view of a certain lobby group. So I've made a PDF copy for our records. See attached PDF file.
I am utterly fed up with these people telling us they have the "secret"!:mad: The damage they do is immense - by raising false hope (which is then most often dashed), by encouraging investment in costly and time-consuming diagnostics/treatments/bo... of little value, and by oversimplifying the...
I've read all 243 (so far) comments as well as the article. There are a few eloquent testimonials in there, such as Justin Reilly's, but also a dispiriting sprinkling of brainless prejudice. This one particulary got my goat: David Devonis: "If a person is employed (and writing for the NYT), then...
Time for an update! Thanks @SDSue for the reminder. Right now, I'm smiling as I write this. I've improved a lot. I've been having coffee with friends again on a regular basis. I can now leave the house for 4.5 hours. I went out to Black Angus restaurant with family on New Year's Eve. I...
This is intolerable! This man has uncovered our fiendishly conceived plot to use the Office on Women's Health as a front for our efforts to plant deep cover agents within the IOM Committee - thus finally realizing our long held dream (well, long held since 2014) of seizing ultimate control of The...
Chronic microglial activation (a long-term inflammatory state in the brain) has been shown to exist in ME/CFS.1 When activated, microglia can produce high quantities of the excitatory neurotransmitter glutamate. 1 2 So when microglia are chronically activated, as they are in ME/CFS, this can...
I'd really love to organize a trial of CBT for people complaining of car troubles, it sounds crazy but I'm 100% sure it would work. You start by recruiting people complaining of problems with their cars and give them questionnaires to rate how faulty they considered their vehicles to be. You then...
While getting confused, excited or frustrated about the new name and the new criteria, the IOM proposed, we shouldn't forget, what's actually said in the full report. The 300 pages document is very exhaustive and they tried to cover all of the main issues regarding ME/CFS. I just crossread it, but...
The chronicle is published today in Norways biggest non-tabloid newspaper (Aftenposten) Translation is mainly by Google translate with a few attempts from me to correct the strangest results of this. Chronicle: The ME sufferers deserve serious research Now we need politicians, health and...
i think the Q: 'Have you ever considered suicide FOR RELIEF FROM your ME or CFS symptoms?' only provides one piece of the puzzle. i'm bed-ridden 100% for 12.5 years, cannot be lifted, put in a wheel-chair, etc. BUT if i were to contemplate ending my life it would be because i have petitioned every...
I want to add something here, when you criticize the IOM report do so on the basis of what is in the report, or conspicuously missing. Do not make personal attacks on members of the committee, who did volunteer their time and effort, and recognized that something is seriously wrong, even if the...
Oh dear - the usual 'tired woman' photo, and a link to the Kings College London Chalder exercise crap. :( We need to get @adreno's avatar photo out there in stock photos for ME/CFS/SEID! http://forums.phoenixrisi... on the beach
This says more than words. It does, and it also sheds light on a lot of other studies that seem to have contradictory findings, with some finding a certain cytokine high and another finding the same cytokine low. All future research into this disease is going to have to take length of illness into...
The full title won't fit in the title: Objective measures found a lack of improvement for CBT & GET in the PACE Trial: subjective improvements may simply represent response biases or placebo effects in this non-blinded trial http://www.bmj.com/conten...
Distinct plasma immune singatures in ME/CFS present early in the course of the illness Mady Hornig, José G. Montoya, Nancy G. Klimas, Susan Levine, Donna Felsenstein, Lucinda Bateman, Daniel L. Peterson, C. Gunnar Gottschalk, Andrew F. Schultz, Xiaoyu Che, Meredith L. Eddy, Anthony L. Komaroff, W....
The Science Media Centre seemed to have excelled themselves in missing the point. We patients are clearly telepathically conspiring to force the immune system to dysfunction according to precise patterns in our attempt to emotionally communicate our repressed childhood traumas while faking illness...
