Thank you David Tuller!
Thank you for such an insightful and thorough article. I have been ill with this disease for four years. Before that I was full time English and Creative Writing professor at a community college in Houston, Texas. Today I am semi housebound and one hundred percent disabled. Myalgic Encephalomyelitis stole my life. ~ Posted by: krey76, Jan 29, 2014
Thank you for sharing this excellent article by David Tuller. I so appreciate BuzzFeed and Dr. Tuller for drawing attention to the current efforts by our experts and advocates to stop the IOM contract, as well as introducing us to the very brave Jeannette Burmeister. I am sharing this article with my friends and family and hope everyone else does so as well. ~Posted by: rainforest, Jan 29, 2014
The IOM redefinition efforts are madness!
This is such a good article! It gives a good insight into the life of a severe M.E. patient, and into the politics of M.E., particularly the last episode in a long history of government mismanagement: the kafkaesque efforts by the DHHS and IOM to come up with a new definition for this disease.
This quote says it all: “If I were redefining the criteria for diabetes, I would certainly want 25 diabetologists to render their opinion,” said Peterson. “I wouldn’t want neurosurgeons and psychiatrists and people who have never seen a patient. I can’t imagine being on a committee for some disease I don’t know about.” ~ Posted by: AzizaJ, Jan 30, 2014
Doing Our Best
Thank you for the information concerning the IOM and the contract that was issued by HHS. I will be an internet attendee of the meeting on 1/27/14, so the timing of your information gives me a better awareness of things to keep in mind. While it seems that there are political motivations at work behind the contract, I am hopeful that some good may still come of it. As a ten year patient, I sympathize with what both you and your wife are facing and hold you both in high esteem for sticking together.
I made a brief comment by email to the IOM on the meeting and included a set of slides that they could access (or so I thought) on my Google drive concerning a hypothesis for ME/CFS etiology. To my surprise, I received an email back from a member of IOM requesting access to the slides. So it seems they are at least trying to pay attention to what we have to say. I take that as a positive sign.
In the end, all of us have to keep doing our best to find our own answers and solutions. Right now I am very hopeful about the hypothesis I mentioned. I ran the concept past Dr. Kogelnik (OMI/Stanford) last year. It involves a feedback loop between the immune system and mitochondrial function. He said that it might be right, but we don’t have the data to prove it. Since I did not feel I had time enough to wait, I have become an experiment of one. After about six months my situation has improved significantly. Thank you again for your efforts on behalf of all with ME/CFS. ~Posted by: me/cfs, Jan 26, 2014
It appears that the “regulars” on these committees are making quite a nice living on OUR tax dollars while deliberately minimizing the probability that we will ever see any meaningful research into our illness. Since they are so happy to live out of our pockets, the least they could do is promote a case definition and research aimed at eventually restoring us to health and work. How else can we continue to support them in the style to which they have become accustomed? ~ Posted by: sick4ever, Jan 30, 2014
Fantastic choice, ProHealth!
And congratulations to Jennifer Brea! This award is so deserved. She’s a relative newcomer to ME/CFS (many have been sick for decades) but already she’s proved herself a powerhouse, galvanizing the ME community with her Kickstarter campaign last year, and every time she and her documentary wins notice, as it keeps doing!, a breath of fresh air and hope sweeps into the dark and cloistered bedrooms of those of us who lie ill and unseen. Her ongoing Kickstarter updates have also helped spread the word among patients and supporters about the most pressing current issues for ME/CFS (including the Institute of Medicine’s new role in redefining the disease’s diagnostics, a mostly unwelcome and controversial move, to say the least), and this in turn, allows for increased viral outreach. As a patient now for 11 years, whose once active, vocal life has been shattered by ME, I am grateful to Jen for the face and voice she is giving to a desperate and neglected cause. May the ProHealth Award be a harbinger of great things to come. ~ Posted by: Lpatri, Jan 29, 2014
“Cat Among the Pigeons”
Thank God for this intervention! How many people with “depression” diagnoses have “treatment resistant” (aka. refractive) depression. I can tell you it is many, well over one third of cases.This urgently needs expanding to larger clinical studies and biochemical studies.
Depression has no biomarker. The hallmark indicator of depression is cognition. Albert Bandura once called depression “learned helplessness”. (Not a theory I took to in my undergraduate days). Of course it isn’t easy to discriminate between cognitive indicators of “depression” and a disease which “gets you down” but it is easy (but not cheap) to identify the biochemical differences as these clinicians have done. Congratulations to them. May we have more.
However, on talking with colleagues we are agreed that in teenagers ME does appear like depression much more so than in adults. There is a lack of motivation, irritability and diminished mood when compared to adults over 40. Pair that with parental lack of empathy and you can see why these teenagers are diagnosed with depression. However this is no excuse for the bias to diagnose them with depression. ~ Posted by: IanH, Jan 31, 2014
“Chronic fatigue syndrome (CFS) presents with fatigue, low motivation, diminished mood, and reduced activity, all symptoms having extensive diagnostic overlaps with depression.” Really? This makes you wonder what criteria they used. And it underlines the need for accurate criteria like the CCC or ICC. ~ Posted by: AzizaJ, Feb 1, 2014
A Year of Promise
With all of the promising work that is slated for this year it would seem that the breakthrough we need will come soon. But to build a consensus in the medical community as to what ME/CFS is and how to handle it will require a biomarker(s) and FDA approval of at least one drug. I hope some of this technology and research will wind its way toward these two cornerstones. ~ Posted by: me/cfs, Feb 10, 2014
Thank you for taking the time and putting in the effort to shed some light to a community who have been living in darkness far too long.
It seems as every year there is a “latest new hope”, yet we never seemingly get anything clear and definitive as everyone knows. So much information can be overwhelming for those struggling to survive with little money or cognition. However, progress is being made. Progress only because of the push from activists and this community. I am infinitely appreciative! I believe we must all continue to work together with an effective and collaborative strategy, as clearly many are.
Always, I want to thank Rich and ProHealth for this incredible website and all the work he/they have done covering as much ground as humanly and technically possible. One day this community will post a link we simply download to our biology and completely heal 😉 Much blessings and success to all who participate in these efforts, far too many to name, but many have made HUGE contributions!
Mahalo Nui Loa Cort for the condensed, yet comprehendable info. Sending positive intentions :)))))))))) ~ Posted by: herenow23, Feb 11, 2014
Physiology not Psychology
Thank you for providing a thoughtful look at the subject of depression and ME/CFS. While some in the medical community have been guilty of trying to lump all ME/CFS patients into the “lazy, crazy or depressed” file, their approach has not been of the scientifically sound path you have laid out here.
In agreement with your research, I read a study that was done on a group of women recovering from cardiac bypass surgery in order to help reduce post-surgical infection. An inventory showed that there was a correlation between those with increased infection and a history of depression. Blood tests on the group further revealed that these particular women also had reduced natural killer cell cytotoxicity. Thus, a feature common to ME/CFS (reduced NKCC) was also present in a group that had a history of depression.
While depression is not a symptom present in many patients with ME/CFS, for those who do suffer from this symptom, it is more likely a result of the physiology involved as opposed to the psychology of the situation.
I am in agreement with the research that suggests there are many pathways that lead to the overall dysfunction. One of the best marathon runners in history, Alberto Salazar, suffered chronic fatigue and depression after reasoning that logging up to 200 miles per week would only make him better. He was helped to recovery by Prozac. ~ Posted by: me/cfs, Feb 18, 2014
AmpIigen, or …
I rated the article five stars because I admire the effort and leadership toward moving the FDA to approve a drug for the treatment of ME/CFS. I would imagine that if I had experienced relief from Ampligen, that is the one I would be pushing for.
However, a sense of realism pushes back at me when I stop and think that the FDA has given Ampligen two hearings and turned it down both times. In addition, Hemishpherx has not done any further research and has pending lawsuits as a result of the 2012 hearing. Perhaps, even though another drug might not hold as much promise as Ampligen, it might be time to try a different route.
In agreement with your statement that one drug approved by the FDA will change the course of the disease forever, I feel we need to help the FDA find the easiest route available to that approval. I appreciate your efforts and hope you do not see this as criticism. ~ Posted by: me/cfs, Feb 10, 2014
I have a daughter with a neuroimmune disorder, and our entire family agrees that removing her for the “care” of the medical profession, who worshipped at the altar of CBT and GET, has improved her condition immensely.
CBT can be helpful, but it is a skill, and once you learn it, it is not really something you need on an ongoing basis. A refresher once in a while might be helpful.
Forcing GET on a patient with a neuroimmune disorder is torture. I mean that in a literal sense. I watched a show about one poor girl who had similar symptoms who was forced into a treatment program based on GET, who described how terribly she was tortured. My daughter’s doctor suggested something similar for my daughter. That other child did not improve much at all in the GET program. However, she did later find another child with similar symptoms, which led her to a Lyme diagnosis, and once she got the proper medications, despite having to be on them for a year or more, she did recover. Which clearly demonstrated that the GET was not the appropriate therapy for her.
GET is a dangerous fad in the medical community for this type of illness, popular because there is no effective medication for this disease, and without medication, if they don’t have a therapy to shove down your throat, they are useless, and they know it.
Trust me, lack of a lap or two around the block is not what caused these servere and debilitating conditions. These kids had plenty of exercise before they were struck down. And, a lap or two around the block will NOT make a dangerous neuroimmune disorder disappear like a mirage. These doctors need to lose their licenses for that kind of snake oil quackery. ~Posted by: dfwmom, Feb 7, 2014
“The guardian responded saying that he trusts the team at Hammel Neurocenter and that he believes Karina is currently receiving the correct treatment but he said he would bring up their request at the next meeting with the team at Hammel.”
Can this guardian be held accountable for the severe abuse, trauma, and gross medical negligence suffered by Ms. Hansen, as well as the emotional trauma experienced by her family?
Nuremberg principle IV: “The fact that a person acted pursuant to order of his Government or of a superior does not relieve him from responsibility under international law, provided a moral choice was in fact possible to him”.
Over 4500 peer-reviewed papers document the biological nature of ME, and both the CCC and ICC medical primers – endorsed by the world’s leading ME experts – are freely available to the public.
All individuals and government employees involved with the home invasion, kidnapping, and torture of Ms. Hansen deserve to be held professionally and legally accountable, according to both Danish and EU law. ~ Posted by: Equality72521, Feb 9, 2014
We can add Henderson TA’s study using valacyclovir on previously diagnosed depression confused ME/CFS. So both valgancyclovir and valacyclovir have been used. ~ Posted by: IanH, Feb 7, 2014
While I have the highest level of regard for Dr Komaroff and his tireless efforts on behalf of the ME/CFS community, I felt let down by his list of treatments (about 48 min).
I do believe that CBT is a valid treatment that can help patients deal with the effects of the disease. As he points out, it is used in many illnesses to help patients cope. My home grown version was to buy an inexpensive guitar off Amazon and some instructional videos. It has been a benefit to me in several ways, and perhaps it has even restored some damage done on neural pathways. Anything that engages the mind and hands (needlepoint, puzzles, music) can have these benefits.
To hear Dr Komaroff say that graded exercise therapy is a valid treatment is where I am deeply disappointed. Post exertional malaise is what exacerbates symptoms for most patients. I have tried in every way possible, and this avenue is a disaster. I am under the care of a specialist in this field (a physiatrist) and it has frustrated his efforts as well. As a former marathon runner, there is nothing I would rather do than go back to those days. To my experience, saying GET is a valid treatment for ME/CFS is similar to saying that you can save money on your energy bill by turning up the thermostat slowly. If you use more energy (especially while symptomatic), even in small amounts, you will pay for it. ~ Posted by: me/cfs, Feb 8, 2014