National ME/FM Action Network: Finalist in Aviva Contest!
It has been announced on the Aviva Community Fund website that the National ME/FM Action Network is a Finalist in the large prize division in the Aviva competition. Each Finalist receives $5,000 and is in the running for up to $100,000! Judges will determine the Grand Prize Winners and the announcement will be made on Jan. 27th, 2015. Thanks to everyone who helped in any way to move the Action Network into the Finals! It was great teamwork that got us there! Special thanks to ProHealth for publishing the contest article! ~ Posted by: frenchtulip, Dec 12, 2014
A groundswell of support for M.E.
Thank you for doing this story, Russell.
With regard to the P2P Protest, I am so glad it all came together in time (despite less than a week of pre-planning) so we could show the NIH/HHS just a glimpse of who M.E. patients are and why we are angry about being ignored and mistreated, and why we are opposed to the P2P/IOM fiasco.
A huge thanks to Mary Ann at MEadvocacy.org (who is ramping up for more protests/awareness events for 2015) who responded immediately to my callout to the M.E. advocates to do a protest. She helped make the idea a reality by collaborating with Christine and I (as well as a few other advocates). Our little band of advocates collaborated with lightning quick pre-planning, communication during the lead up, and sharing news with the M.E. community while the event was happening.
I wish we could have had more time to build more posters so every M.E. patient who wanted to be there could have been pictured right there on the sidewalk outside NIH. Even so, I am glad that exactly 12 pictures came in for our 12 chairs on Monday afternoon! It was unbelievable.
Christine and I wrote a detailed account of the protest on my Caringbridge site. It is the Dec.12, 2014 entry.
My wife Christine has now posted a complete, publicly-viewable album of photos of the Stand-in, Lay Down Protest on her Facebook page (Christine Jarrett – she is on Facebook, I am not). We also added 3 short videos from the Protest to her Youtube channel:
I hope it encourages all patients/advocates with M.E. to know there is a rapidly growing number of healthy people (mainly from our church family so far) that originated in our local Indianapolis community (12th largest city in the USA) and extends well beyond (church friends as far away as Japan) who are becoming aware and stepping up for M.E. patients.
This group of M.E. supporters that you may have never heard of played a key role in raising several thousand dollars for MEandYou to fund the Rituximab study in Norway, another thousand dollars (at least) for Dr. Ian Lipkin’s microbiome crowdfund, and most recently supplied much of the practical, material legwork as well as spiritual prayer support that made the Stand-in Lay Down protest of the P2P/IOM redefinition efforts possible.
You can be sure that this group will remain committed to providing and fighting for you until the disease M.E. is respected, researched, and viable biomedical treatments found and offered to every last M.E. patient.
I am very in awe of you and your incredible persistence in the face of unbelievable bureaucratic malfeasance! My take on their unlawful actions is that their orders have to come from on high or their heads would roll and they would be out of a job. Can you, maybe you have and I have not seen it, elaborate on what you feel is their reason for being so evasive in giving the lawful information you’ve requested? I have my suspicions on that as well but I won’t elaborate on that here. I will just say again that I think you are the David to their Goliath and I wish there was some way to help support you more than with words. I only just learned of your blog and I will follow that in case there is any way you ever ask for help I’ll see it there. Thank you for your precious expenditure of energy, it is very appreciated! ~Posted by: Katwilm, Dec 11, 2014
Your pain and effort are appreciated by so many patients. With this newest development, I hope the easing of the case’s stress on you will afford you time and space to rest and recover. The consistent mismanagement of ME/CFS government studies is extremely detrimental to those of us waiting for a cure or even effective treatments. I am very curious to see what these agencies have been hiding. Hoping you are able to recover from this ordeal soon. ~ Posted by: elusoria, Dec 3, 2014
I am not sure who is actually behind this “campaign,” but it is likely to do much more harm than good. Right now, our lives are at stake with actions being taken by the government to put us so far in the dark we may never climb out. We need an advocacy campaign that actually makes sense and can fight for an end to “CFS” altogether. There will always be stigma around a name that is meaningless. Those patients with Myalgic Encephalomyelitis must be treated as patients with ME. And the illness must be funded. Those who do not meet the criteria for M.E. must ALSO be funded and treated, and they must be given a name that accurately reflects their disease or diseases. “Shaking it out” on social media makes us look like…um…”less than informed” people. ~ Posted by: Tuxiecat, Dec 11, 2014
CFS Stymied Research and Consensus
It is gross negligence at this point, after all these years of investigation and documentation, that so many CFS patients are still going untreated, or have to pay exhorbitant fees out of their own pocket to be accurately diagnosed and treated. What will it take to wake everyone up? And by this I mean insurance companies, the government, employers, and of course the disbelieving medical community… For this completely dishonorable disservice to continue being committed against CFS patients is an outrageous crime! ~ Posted by: vital1, Dec 10, 2014
Cort, Good article. I’d just like to add two points. In my experience (and what makes this disease so difficult to nail down is how variable are experiences are) is that I suffer from moderate severe cognitive problems just from doing any extended mental activity; no physical exercise required. For me, “thinking” is exercise and causes both a mental and physical PEM if I can use that “m” worried which should be buried. Also, small point but a problem i see repeated in soooo many discussion of ME (CFS, CBT should always be defined in detail. As a psychologist, I know that CBT can mean a hundred different practices to a 100 different therapists. We all the know the Wessely’s school original goal for CBT: to rid patients of false illness beliefs. But sometimes, more often in the U.S. it’s meant to help patients cope better with their symptoms. Regardless, it’s one of those acronyms that can mean so many things it should never used without defining it clearly, especially so in research studies. michael allen, ph.d. ~ Posted by: Sergei0001, Dec 7, 2014
With every depth all of my being, Thank You . Thank you for this article. I’m in my 9th year of being sick and don’t know what’s wrong with me. Your story I is my story and I’m moved to ears because for the first time, I am not alone. I’ve been diagnosted with Fibromyalgia, my symptoms vary and are plentiful. I’ll spare you the details because what’s Important is that I feel the same way you do. About every aspect. Like I said, your story is mine. I suffer in silence,alienated, looked down upon, told I’m just lazy anddont want to work. Or why can’t the doctor figure out what’s wrong with you? And on it goes. I have no support whatsoever. Until this moment. My deepest, most heartfelt gratitude goes out to you. ~ Posted by: qtnfluffy, Dec 3, 2014
My heart is always touched by your writing, Toni. Thank you for giving voice for the many who don’t have the choice to “speak* as eloquently as you write. I don’t even want to write how many years my body has been unwell. The thing is that I’m not waiting for funding for research in order to seek solutions on my own. Formal research is usually married to pharmaceutical companies. If there is no profit, there is rarely interest. There are many people I’ve met who have recovered their health to some degree. Each used a different form of healing: some used energy medicine and EFT, some used brain retraining techniques. Others I’ve met who recovered their health used medical cannabis (not smoking) while some have gotten off their overly restrictive diets and ate more food! A whole array of natural treatments have been credited for recovery. You can tell I’ve been doing my own (informal) research. Your contributions are a gift for all of us. ~ Posted by: yarrow, Dec 3, 2014
We have the results of chemtrails and biological warfare in our bodies. I suggest anyone look up Tony Pantalleresco on you tube and see what he has to say. Also, listen to him on http://www.oneradionetwork on taking baths that will pull this stuff out. Toxins are the cause of ALL disease. Toxic substances pave the way for any kind of parasite whether micro or macroscopic. Cheamical poisons and radiation. Look into http://www.DocSutter.com and The natural Healing Paradigm. It works, but you have to be patient and work it. Simplify things. You’re not going to get an MD to diagnose you with all the chemical poisons going around in this world. If they could, they still wouldn’t treat the cause. All they treat your symptoms with is drugs that make things worse. Drugs ARE chemical poisons. Get the chemicals cleaned out and get some good nutrients in there to heal with and get rid of disease. ~ Posted by: Glbee, Dec 3, 2014
wow….they took the usual psych bs and watered it down even further by including all sorts of other somataform disorders,compared it to the typical (by their admission “minimal”) medical treatment and found that it helped a little tiny bit…..no kidding that getting some support helps a little more than pretty much doing nothing….that does not prove even the slightest that these illnesses are psychological – it just shows that counseling can help one to deal with being sick, and that it certainly does more than leaving one with no support and almost no medical treatments. Looking further at the study, when the psych treatments were compared to actual “enhanced” medical treatments (ie, finding specialists who actually tried more than the bare minimum in treatments), the psych treatments did not help. Surprise surprise…..of course psych treatments did nothing for PHYSICAL illnesses!! It is time that “Medically Unexplained” Symptoms serve as an indictment for the Drs who cannot figure them out, rather than the patients. ~ Posted by: AuntTammie, Dec 3, 2014
Thanks for affirming the silence
Re: VIDEO: Misery Doubles Down
Yes, Mr. King, it is the quietest of once bustling seasons in the house where I live. That’s certainly become the expectation for the season since I became sick some 3.5 yrs ago. I can relate to, and thus appreciate, all you say. Yet, I wanted to possibly help raise your own awareness by suggesting reconsideration of two terms you used in your message. Proselytizing and Advocacy. The former has taken on airs of religious zest, while the latter seems more related to making changes in policy and practice. The first can invoke a more bothersome image than the second (although plenty of elected and appointed office-holders probably dread the word advocate). Finally, you used the former repeatedly but the latter only once. I hope we’re more a forward looking force for change working within the system as it is rather than blindly preaching belief in something, whether the product of real ideas or those perhaps imagined in psychiatrically challenged-minds. Happiest of holiday wishes to all readers and viewers. ~Posted by: sPeeDeeBee, Dec 22, 2014
Be careful about conclusions
There are several considerations in diagnostic differences:
1. The peak of incidence is not the same as peak of age of onset.
2. It typically takes around 5 years to be diagnosed.
3. Some, particularly men never get diagnosed with ME but many get “diagnosed” with “burnout” and their continuing symptoms are related to ongoing stress rather than an “illness” per se.
4. It takes longer to diagnose men, for many reasons: the above “burnout” rationale and the much less frequent visits to the doctor. Possibly the greater leanness of men and work associated fitness carries them through early stages of the illness.
5. Reduced ER beta? wt expression level are lower in ME and this is consistent with an immune?mediated pathogenesis of ME.
6. Women who develop ME are more likely to gain weight than men who develop ME. Gaining weight reduces 25(OH)vitamin D levels and ER beta (and its polymorphisms) expression is influenced by vitamin D levels.
So while these results are interesting and some of the conclusions plausible we need to temper them with other information which can exlain some of the incidence data and gender differences. ~Posted by: IanH, Dec 25, 2014
Didn’t work for me
I was put on Duloxetine for a completely unrelated reason and I have not found that it has improved my fatigue…..nor has it worsened. ~Posted by: Pagemaster, Dec 29, 2014