The severely ill…..They are the most baffling, disturbing and potentially illuminating subset of ME/CFS patients found.
Baffling
It’s hard to even read some of their stories. Their degree of debilitation can be mind-boggling. At their worst they can be totally bedbound, shuttered in darkness and almost completely removed from the world. The smallest stimulus can send them into a relapse. It’s as if their nervous systems have collapsed on themselves.
Where to start with the severely ill? The End ME/CFS Project proposes to look everywhere they can.
The medical profession rarely encounters such complete debility. Consider that people in the last stage of heart failure can get around better than many of the most severely ill patients.
How formerly healthy and productive people ended up like this is a complete mystery. No findings in ME/CFS can explain this kind of debilitation.
It’s time someone tried.
Disturbing
They’re too weak to see doctors and most doctors will not make house calls. They’re far beyond the help of primary doctors anyway. They need ME/CFS experts and even with them there are no guarantees, no protocols on fixing this kind of damage. They’re basically at the mercy of whatever process is eating away at them.
They’re the most difficult patients to find and to study. Most can’t go to hospitals. They can’t go to labs. Everything – testing equipment, researchers, doctors – has to come to them.
Illuminating
They’re maybe also chronic fatigue syndrome’s lodestone. Lodestones are stones with magnetic minerals that sailors used for hundreds of years to find their way. These severely ill patients may be ME/CFS’s true north.
Shining a light on this unexplored part of ME/CFS may shine a light on everyone else.
Their very debility makes them valuable. ME/CFS, after all, has almost completely taken over. It’s signal is burning brighter in them than anyone else.
They’ve never gotten into research studies, though. Their signal, as bright as it is, is still obscured. They are mysteries waiting to be probed.
ME/CFS research is moving forward. Much of it, however, is like the guy who lost his car keys who’s searching under the streetlight because that’s the only place he can see. We’re searching where we know and we’re making progress, but the key probably lies elsewhere. It almost has to. Nothing thus far, after all, can even remotely explain how to turn a healthy active individual into a bed bound shell of themselves. We need to look everywhere we can at least once.
My guess is that when we look in the right place the key to ME/CFS is going to light up like a candelabra. Crippled genes, broken cells, bizarre proteins, hidden infections – they’re there waiting to be found.
When they are it’ll be the biggest moment in ME/CFS history.
And the Least Shall Be First
The Open Medicine Foundation’s ME/CFS Severely Ill Big Data Study proposes to go on a massive search for the molecular core of this disease in the most severely ill of us.
There’s something very right about employing the severely ill. When this massive project is done, the most invisible group of this invisible illness will be better known than any other.
It won’t come cheap though. About twenty-five thousand dollars of tests per patient will get you virtually every molecular test* under the sun.
What will illuminating the darkest corners of ME/CFS – the severely ill – show us? Nobody knows. There are no certainties, there never are – but it could show us the way home. It’s the kind of bold project we need. It urgently needs funding.
Support the Severely Ill Big Data Study Project here.
Find out more about it here.
Learn About the Open Medicine Foundation
Health Rising Inquiry of the Day: What is Your Functional Status? Tell us how much you can do – Take the Poll here.
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*Mitchondrial DNA, exome DNA, cell-free RNA and DNA, DNA methylation of all immune cells, metabolomics, proteomics, gene expression, individual immune cell analysis, KIR and HLA DNA analysis, flow cytometry, pathogens, fungi, heavy metals, toxins in the blood, sweat, saliva, tears and fecal analysis and more.
This is amazing, I will donate right away.
I’ve gotten ill at 22. I am 28 years old now and my ME/CFS is just getting worse and worse and worse.
I almost never leave the apartment and I leave the bed just to go to the bathroom and not even that sometimes. I can’t see doctors any more (not that they were of any help). My parents pay the cardiologist to make house visits because I need to take beta-blockers.
I got a really bad toothache a while ago and absolutely had to see a dentist. Even though my parents took me there and the dentist was very accomodating, I spent then next month and a half with low-grade fever unable to do ANYTHING. I spent all that time in silence and darkness and pain.
P.S. I’m brain-fogged so sorry if I’m being dense here, but when I click to take the poll it just jumps to the top of the page?
You weren’t the brain-dead one – I was :). Here’s the right link – http://cortjohnson.org/forums/threads/me-cfs-fm-functionality-poll.2392/
The dentist – boy does that illuminate how problematic things can get. You HAVE to see the dentist sometimes…but what if you can’t? That puts things in perspective.
Hey Cort. I notice that more and more action is directed to the forums. But for the severely affected amongst us forums are often no-nos because of the long discussions and multiple topics. I’ve been bed bound in a dark room for six years now, and your blog is one of the very few sites I prioritize my limited energy on. No forums for me. Maybe you want to put polls and info here on the blog to reach everybody?
Oh Tally-so sad you are so ill-I was diagnosed ME 28yrs ago but 10yrs ago had private tests done that showed Lyme disease-doctors know as much about Lyme as they do about ME! I went to Breakspear private hospital, Hemmel Hempstead UK for tests as they are the only hospital in UK that seems to be able to deal with the tests. If you can I would seek advice at this hospital and go on EuroLyme group on yahoo,
Take care, Jacqui
Thank you. I’ve been tested for Borrelia twice and both times it came back negative. I know this test are not precise, but as you said having Lyme is almost like having ME – no definite way to test for it and no way to cure it.
I’m not sure a UK hospital would reply to a Croatian patient but I will look into the group you suggested when I feel a bit better.
Jimmy this is interesting to hear (though sorry you’re going thru it) as I got diagnosed with cancer (lymphoma) as well at 29, (13 yrs after onset of illness, am now 20yrs in). The doctors just said I got it “on top of things”.. but I still feel like it might be a clue. I was afraid having cancer would exclude me from the study, but maybe I should contact them again letting them know. I also have early signs of diastolic dysfunction for no known reason, as well as a bunch of other conditions, things assoc. with autonomic neuropathy like POTS, gastroparesis, vestibulodynia, pelvic floor dysfunction… also carnitine deficiency, raynauds..etc. etc…
Was there a contact that you applied to? I would love for them to look at my case and see if I qualify but I haven’t gotten any responses from them yet.
Hi, Biological markers period. That’s how I got accepted. If we want to find out about disease then we have to show real biological dysfunction. There are plenty of markers that define this disease. Further when the disease leads to cancer twice, sever heart issues and host of other illness and biomarkers then they will pick you out. For instance when I went to Stanford recently they have concluded that 50 percent of the people they see don’t even have cfs. That’s a strong statement. I’m going for cancer surgery again in 2 weeks. I’m the poster guy for this disease. p hi cort hope your doing great
Good luck with the surgery Jimmy! Can you say what biomarkers they used? NK cell dysfunction? Antibody levels?
Hi Cort. I’m going to right a book try to get celebrity endorsements soon. It will not b exclusively about me-cfs but wil make its mark on people an lead to more help I’m hoping. To answer your question sever inflamatory markes ,cytikones,brain through pet scan looks like ms,immune system auto -under immune nk 10% and working below 10%, pem, Heart issues dyautomenia, very low blood pressure racing heart. ect. Then you need to capture and translate your illness and show secondary illness and causation. If it looks like a duck ect. Good at connecting dots. This is just some of my issues. Obviously cancer twice which I told my doctor I would get way before diagnosis. Also at 30 years old my cell levels were at aides levels lost all my body hair and weight. Sorry for spelling buddy. I’ll try to help this disease through celebritys and my own testimony. I can still youse a research buddy and fact gatherer???? JC you definitely should be researched as your case looks like it deserves consideration to say the least. I’ll see what I can do for you. Smile all be positive and strong. I’m ver spiritual and have no fear that’s one or some great things that I have embodied from having this disease. Thanks cort all my best to you
yes jc sounds like that’s exactly whatcaused your diseased state. That being cfs. We all have to youse common sense and know our bodies. If you have disease there are all sorts of biomarkers there. Brain, immune, inflammation up the ying yang. The fact that 50 percent of people don’t even have cfs is part of reason why they can’t figure out disease. My answer to you is cfs caused and is causing everything. E mail me july 14 and I will talk to them about your case and try to get you in. further I would try to get to Stanford if I were you We have to be smart and strong. qwe have to help eachother and most of all be publick pick some advocates with a knack of being able to communicate to people in charge and or celebritys to get funding education ect. When I go to top docs I explain issue of this disease so there is no question in there mind what and how disease develops and cascade of events it causes in my body. This is what we need. you know when you know whats causing your body to get sick. I’m here for you. Keep positive and strong and see the bigger picture in life which I like to call god within and you will lose all fear as I have done. p sorry cant spell do not waste time with spell check p
Thanks Jimmy for your support. I actually just heard from the foundation today and they’re only accepting patients near the Stanford area, so I’m not eligible.
Tally,
You’re not alone. I’m 34/ f, became I’ll at 20 when I got Mono. For about 5 years, from 27 to 32, I was bedridden. It’s the worst thing in the world. The WORST. BUT I am doing better. I have been doing Aqua therapy with a physical therapist 2x/week for the past two months and while I haven’t improved massively or maybe even moderately, but definitely a *little*, it’s good to make some improvement. I have have have to tell you that his physical therapy, as f****ing hard as it is even to GET to the pool, is the ONLY ONLY ONLY way I’ve found to make some traction forward. I want you to only think seriously about that. I have tried SO MANY OTHER THINGS but the ONLY one that has worked in 14 years has been very mild movement in warm water. My heart and thoughts are with you. Please feel free to email at the email address I included. I don’t want anyone to ever feel so alone as I have.take good care, bridget
Thanks Cort for being our lodestone!
Hi,
Are they recruiting for the study yet? Do you know can we apply to be a participant? I really need to be part of this study! I’ve been getting progressively worse for 20yrs now..since 16 yrs old. I’m now homebound, unable to work/drive, and wake so sick each day I struggle to just sit upright. I’ve tried every treatment imaginable and only get worse. I live alone and have no one to help care for me and have extreme difficulty finding and qualifying for any resources. I’m so desperate for someone to look into cases like mine. I agree that much can probably be learned. I feel like the severely ill are always the forgotten population in research studies. I hope this study really happens and finally sheds some much needed insight!
Any further info you can provide would be extremely helpful, thanks!
I would contact the Open Medicine Foundation and get you name on the list. If you can’t get in now I’m sure they want to keep expanding the study as they get more funds. This is the email address listed on the site – info@openmedicinefoundation.org
I feel that this can only be the BEST approach! Examining extreme cases… Like viewing things through a magnifying glass, except it’s the things themselves which are magnified, so to speak. To me the recent Hornig-Lipkin findings related to duration of illness (less than 3 years vs over 3 years) seem somehow of lesser informative value than what we could learn from looking at illness SEVERITY alone, whether you have been ill for 2 years or 20 years. Finding out what processes correlates with severity of symptoms has to be the way to get at the core of the pathology.
It’s going to be very interesting…!
I am excited about this approach too both to elucidate what is going on with all of us as well as to provide some help finally for those with the most limited and difficult lives. Cort I really enjoyed your analogy for a lot of the research so far as being like a man searching for his keys under the street light because that is where the visibility was greatest. And I also enjoyed Christian’s analogy for studying extreme cases as like looking at things under a magnifying glass–except that it is the things themselves which are magnified.
But I wouldn’t want to have Hornig and Lipkin’s discovery of the changes in the immune system after 3 years to be put aside. This can be another variable studied within the severity study. I wonder if the 3 year downturn in immune function could be happening at an accelerated pace for the most severely ill and if it keeps on going. For many of us there seems to be a homeostasis struck, at least for a period of years, then maybe a downturn and further stabilization there, then another, etc. But maybe the severely ill aren’t able to strike that new homeostasis at least until a very low low is reached.
Really great writing here about lodestones and the severely ill. I agree that this is the direction to study and I’ll be very interested in results.
I haven’t been able to take the polls on the forums, so I tried signing up, but I never got a confirmation email even in my junk folder. While I think a forum is a wonderful idea, and I see why you are directing us there, I would love it the poll could somehow be on both the blog and the forum. Thanks for all you do, Cort.
That would be wonderful and makes sense. Is there already substantial funding available or does it have to be raised? Thank you.
They definitely need funding!
All the molecular studies you do won’t reveal a Chiari 1 malformation usually in background of EDS
No, but it could reveal the molecular deficit that is driving the connective tissue problems in EDS; i.e. it could get at the molecular core of the problem.
Great to hear about this study – I’ll donate to this.
Do you know if they’re applying for NIH (and other) funding?
They’re trying. Getting funding is difficult, of course – we all know that – but what I didn’t know was how long it takes; if they do succeed the money won’t be available for another year.
Good to know.
That’s no reason to hold off donating, of course – I think we all know not to rely on the NIH for funding high-quality ME/CFS research.
I think this research idea is very valuable. But I think we need to look at more than just individual chemical markers. I have no doubt that structure and function are critical in many or most cases. Once the sacrum, which is held in place with ligaments, not muscles, is destabilized the entire musculoskeletal and central nervous systems are affected. EDS people have naturally loose ligaments, and therefore tend toward sacroiliac dysfunction. Alan Lippitt, MD, ( orthopedic surgeon, pelvic specialist) has stated, “Any alteration in the normal mechanics of the pelvic girdle will have a profound effect on the function of the entire musculoskeletal and nervous systems.” People with scoliosis may be ay high risk. From The Fibromyalgia Syndrome: a Clinical Case Definition got Practitioners, edited by I Jon Russell, MD, PhD, “FMS patients frequently have a functional short leg caused by assimilation (up slip) on one side of the pelvis. . . and incompetence of the sacroiliac ligaments.” (Page 18)
“There is often a compensatory scoliosis of the lumbar spine . . . and scoliosis of the thoracic spine with convexity in the opposite direction. ” In my family, and many others ( was support group leader 13 years) the chronic fatigue and scoliosis ‘run’ together. this a really important observation.
Great points! I was just wondering yesterday if there’s a connection between scoliosis and ME/CFS. What timing to then read your post.
If you have more links about this connection, I’d be really interested in them. Personally, I’ve found that good spinal alignment does have good effects.
Thanks to Cort for spotlighting this important study.
Merida and L., I was diagnosed with rotoscoliosis a few years ago by a chiropractor. Since then I have read that Myofascial Trigger Points can cause a pull on the spine due to a tightened muscle(s). Then the body compensates by the muscles on the other side of the spine pulling back, creating trigger points too. Then both sides of the spine continue the back and forth pull which results in a twisted spine. I would like to see more on how Myofascial Trigger Points contribute to our health issues.
I would love for someone to do a blog on that (Donna ???).
It makes sense to me given my terminally it seems tightened muscles.
Cort, I have never done a blog, so if it’s OK with you I will just ramble here and folks can take what they relate to and toss the rest out. I feel humbled to share on this page with those of a great deal more understanding of ME/CFS. However, several years ago I wrote a 12 month curriculum for a support group on FMS, ME/CFS, and Chronic Myofascial Pain. As I was researching CMP, I discovered it was declared a disease several years ago with the main symptom being the development of myofascial trigger points. They (TrP’s) begin with a tightening of a small area of the fascia, the covering over a muscle that allows the skin to move over the muscle smoothly. That small area changes from smooth to hard and the muscle below is tightened also. Blood vessels and nerve fibers can become restricted in that space and pain is the result. The pain is usually referred, which makes it difficult for a dr. to diagnose. Over time, if untreated, TrPs can multiply presenting a great variety of symptoms. But the best news here is that CMP is a disease that is treatable, with it’s very own ICD9 code and insurance will cover treatments. Anyone can get TrPs, but a “normal” person releases the TrP during sleep. We don’t do that. Also, you can have CMP without having Fibro, but if you have Fibro you will have CMP also. I haven’t seen any studies that relates ME/CFS to CMP. But it makes sense that we would be more likely to have the disease as well. The best author on the subject is Dr. Devin Starlanyl. She has a website and has several books on CMP and FMS. Any time I have an issue that stumps a dr., I can usually find it in her book. No kidding. And the last thing, rotoscoliosis is not unlike scoliosis, except that the spine observed from the front will show an “S” as the TrP’s have pulled it out of alinement. In 2009, my spinal x-rays showed I had a well developed rotoscoliosis. After working two years with an osteopath that treated my back muscles, my spinal x-rays now show a straight spinal column. Just one last word of caution, be careful in selecting your therapist or doctor. If you aren’t getting well or they hurt you in some way, keep looking, there hasn’t been enough training in this field yet. Good luck everyone. Thanks, Donna K
Fine with me Donna – thanks sharing that.
Very true, Donna. It can also work the other way around. Some Chronic spinal alignment issues can pull on the muscles, cause muscle spasms and tender areas. I’d never heard the term rotoscoliosis before.
I’m with Cort in that I would also be interested in a blog on these subjects (from Merida on down the thread). 🙂
I haven’t checked it out yet, but perhaps a Mendus study on MECFS and scoliosis?
Donna, I have had a lot of myofascial work, but the trigger points reform. I don’t know about others’ experiences?
The origin of scoliosis and its role in the myofascial issues seems important. I have ordered a book called ” Scoliosis and Spinal Pain Syndrome: New a Understanding of Their Origin and Ways of Successful Treatment’ by orthopedic surgeon Professor Dr. Valentyne Serdyuk. Scoliosis has been present in the human population for thousands of years , yet 80 per cent of the cases result from unknown cause. It is believed that Tutankhamun suffered from it. Hope to learn more.
Scoliosis is a common feature of a connective tissue disease, as is fatigue, photophobia, hyperacusis etc etc
Merida, I know they can come back. I deal with that too. I think I interjected too light a choice of treatment especially for scoliosis. I just know my spine straightened with treatment. Others who have scoliosis for other reasons of course would not be helped. Discussions on CMP can become quite complicated quickly. The best of luck to you and I hope your book will hold some answers to your questions.
I just wanted to say thanks from the bottom of my heart Cort.
Your dogged determination to uncover and widely share information has done as much for me as any any doctor. Your work is a welcomed antidote to the endless greed of American medicine.
Thanks so much for your honesty, spirit and your altruistic desire to help us all!!!
Gracias!
I couldn’t have said it better myself @Patrick. “Ditto”.
Thank you, Cort!
A reason to hope. I begin to really believe I am not quite as alone in this struggle as I might sometimes think. THANK YOU!
Many of the most severely ill I know personally are not able to respond to this wonderful forum; they cannot withstand the computer, tablet and phone EMFs and ELFs/wifi , Smart Meters and microwave bursts from the cell towers because their neurology has been so damaged before and more importantly after all the wireless tech started coming in about thirty years ago, when many of us first became ill or worse. Yet while their systems weaken from all this they, uninformed because the industry always values profits above people, does not want people to know and therefore the availability of research is limited for all but the most persistent researchers, are getting only partial help from the hottest new research. MICROWAVE-RELATED INJURIES LISTED BELOW.
See online internationally-renowned researcher Dr. Martin Pall of Washington State University: “Electromagnetic Fields Act Via Activation of Voltage-Gated Calcium Channels to Produce Beneficial or Adverse Effects,” and also “Microwave Electromagnetic Fields Act by Activating Voltage-Gated Calcium Channels: Why the Current International Safety Standards Do Not Predict Biological Hazard,” and his YouTube videos.
He has a protocol, and Dr. Klimas knows him, as far as I have heard. From his second paper: (Effects of microwave exposures include:) “oxidative stress, single and double stranded breaks in cellular DNA; blood-brain barrier breakdown; greatly depressed melatonin levels and sleep disruption; cancer; male and female infertility; immune dysfunction; neurological dysfunction; cardiac dysfunction including tachycardia, arrhythmia and sudden cardiac death”…
Hey Cort the omi has chosen me to participate in this study. I will let you know how it all goes.
Sorry you’re in the subset Jimmie – but look forward to your reporting on it.
May I ask how the OMI chose you? Did you have to already know people from there or was there an application process? I’ve tried to contact them but have gotten no response yet.
I don’t know about this. On one hand it seems like a great idea, on the other hand Ron Davis’ comment about confounding factors, like the very fact that participants being bedridden might send out false signals, seems like a very real and very large concern. I think I might rather a huge study like this be done before and after exercise challenge in order to try and tease out objectively identifiable subsets. Once subsets are defined then it seems like it will be much easier going on all fronts, from treatment to pathophysiology.