Looking to Interview Recovered ME/CFS Patients

[slayadragon]

I think this is a pretty blanket statement that depends on so many unknowns. It may soon turn out that many of us have a disease that is CAUSED by a retrovirus. Therefore, anyone who does not have that retrovirus does not have the same disease. This does not mean they are not sick, it simply means they don't have the same disease.

If (once) causality is shown, the real definition of the illness might become clearer. Patterns might emerge that were previously burried under the vague and amorphous definitions of ME/CFS. Until that time, in my view it is dangerous and harmful to present this disease as something that we can recover from with enough effort or miracle treatments or whatever, when many of us clearly cannot.

My reading of the recent paper and commentary in PNAS is that while it seems that the retrovirus is associated with ME/CFS, it may not be enough to cause the disease all by itself.

Thus, it could be that addressing other factors might be sufficient to make the ME/CFS go away (partly or fully).

Clearly this doesn't happen spontaneously, since otherwise a lot more people with the disease would be well.

I've been trying really hard to get people who qualify for my little interview project, and there are hardly any of them. It's not that people don't want to participate. It's hard to even get any leads.

The ones I've talked to so far have done it very systematically and in ways with an overlap. Based on what I've seen so far, it seems to me that there will be some interesting insights to be gained.

But again, this is exploratory research. It's not designed to prove that we can recover from it. It's not even to suggest that other people with ME/CFS should do the same thing.

(And I certainly wouldn't suggest that they do what I've done. It was totally ridiculous.)

My hope is that if we can find out what factors people have addressed as they've recovered, researchers and doctors can learn more about the disease and thus develop better treatments for it.

Best, Lisa

 

[free at last]

This is actually something i was hoping to discuss, what are the chances that someone with a retro viral infection may indeed appear to go into remission. well apparently more than a few here really consider possible, i think its been mentioned By Judy M that this appears to happen to some ( remission ) lasting sometimes years, Another thing i read, ( think it was Peterson may be wrong on that though ) that its possible over time the body can learn not to react to the retro virus and hence symptoms improve. So it may not be true at all that appearing to recover means no retro viral infection ever existed. In my case its quite complicated, as for the most part ive actually recovered quite well. but ive noticed certain pursuits ( particulaly mariuauna use ) actually makes symptoms worse or causes relapses much more often. I fitted probably every criteria there is, with my illness, suffereing flu like attacks that were very very strong, temps of 102 f Chest infections sight and sound disturbances eventually leading to PEM that meant often days lying down. bizare symptoms ( that still occassionly come and go ) like itching at the back of my throat. Mucsle pain and weakness. headachs nausia and evetually PTSD that focussed on a deep fear of being really ill again catching in paricular FLU something that is a very similar feeling to what started my diagnosis of ME CFS i had this diagnosis from Prof simon Wessley, a consultant at greenwich hospital, Harold wood hospital, and another Psychiatrist at Greenwich hospital who stated CFS recovery within 5 years. Im also 1 of the uk ashford 50 xmrv study, still waiting to find out if i have XMRV. But compared to a persistent viral attack and what felt like poisoning. im pretty much better compared to what those dark days did to both my body and mind, whatever it was, i tell you this, it was either a virus or bacterial infection and i was pettrified. thought i might die. cried with fear, now i suffer as mentioned PTSD to do with catching viruses. My constant thought is you cant make me go back there, i wont go back to those viral attacks id rather die. I might talk to you lisa. i know nothing about you. But i want to learn about these things that are mentioned here, can i have a retro virus and be mostly recovered or in remission ? i belive i can, the uk study will tell me at some point.

 

[free at last]

Hi Helen there is a lot of overlap on the symptoms a lot describe, i also had light sensetive ( and sound ) symptoms, really bad sleep, but the sleep problem makes a lot of sense as the symptoms themselves are discomforting ( when most ill they would affect my dreams ) also the stress and worry about what was happening, and waiting for the next crash ( which always came) its no wonder sleep was very poor. but thats a cycle that if not broken part recovery will probably not happen. it took quite a long time of restored sleep before the crashes got longer between happening, and weaker in strength. in my case a side effect of amitriptylene ( 2 at bed made me very very drowsy ) and most likely the stress modification of a anti deppressant also helped calm my mind enabling it to turn off from the fear and worry. that helped those poor sleep patterns.

But mostly it was the side effec

 

[kday]

You can't 'recover' from an exogenous infectious retrovirus

Yes you can. Maybe not through your M.D., but you can.

GcMAF being the most recent example. There have been many other things in the past that worked that were suppressed by Big Pharma and/or simply ignored.

I know of a man who cured AIDS. I know his family. He cured many people, and was murdered for it.

Choose to believe what you want. After all, it's what you've been told.

 

[Jenny]

Yes you can. Maybe not through your M.D., but you can.

GcMAF being the most recent example. There have been many other things in the past that worked that were suppressed by Big Pharma and/or simply ignored.

I know of a man who cured AIDS. I know his family. He cured many people, and was murdered for it.

Choose to believe what you want. After all, it's what you've been told.

Where is the hard evidence that people recover on GcMAF, kday? I only know of anecdotal evidence that a few people have improved in the short term.

Jenny

 

[kday]

Where is the hard evidence that people recover on GcMAF, kday? I only know of anecdotal evidence that a few people have improved in the short term.

Jenny

http://www.ncbi.nlm.nih.gov/pubmed/19031451

 

[Wayne]

Spinal Cord / Brain Stem Compression Issues

If you know of anyone, would you please ask them to contact me or pass along their information?

Hi Lisa,

I know you're chronicling stories of PWCs who have recovered, but I'm not sure whether you're including stories of those recovered from FM. I'm going to paste one of the last entries made by a woman on the PH board at the bottom. She claims to have fully recovered from her severe FM by having the Atlas Profilax adjustment done, which can relieve spinal cord/brain stem compression. I could probably get hold of her for you if you were interested in contacting her.

Also, Cort mentioned the possible role of spinal cord compression in ME/CFS/FM in a recent article entitled, "Lost in the World? the Romberg Stance and ME/CFS". Here's one of the paragraphs from that article:

Spinal cord compression? - people with spinal cord stenosis (spinal cord compression) can fail the Romberg Test. Spinal stenosis occurs when the canal carrying the spinal cord narrows compressing the spinal cord thus interfering with the transmission of signals to the brain. Dr. Wood, a Fibromyalgia practitioner, noted at the 2010 OFFER Conference that his thinking on the importance of spinal cord compression in FM has changed radically over the past few years. He stated that the evidence now indicates that spinal cord compression plays a significant role in a significant subset of people with FM.
..................................................................

You may also want to check out this remarkable story about a woman recovering from FM using a therapy called "Bio Cranial Therapy".

After 9 Long years -- Wife is Cured of Fibromyalgia Pain

I personally believe varying degrees of spinal cord/brain stem compression/distress issues are probably more common in people with ME/CFS and FM than most people realize. My own experience with the Atlas Profilax released a lot of cranial nerve pressure, and was pivotal in reversing a steady decline in my health at the time.

Any way, I thought I would send some of this information along to you. I appreciate you taking the time and effort to chronicle these success stories. Any little piece of information can sometimes make a huge difference for certain PWCs. You just never know.

Wayne
..................................................

exgolfer
2/17/08 7:06 PM Neck adjustment for Fibro cure
Hi, I had the Atlas Profilax procedure in October of 2006 and I would have to say it has been a cure for me. Even the last 2 months I contintue to regain my energy and stamina. I had Michael Hane come to my home 2 weeks ago and he treated 13 patients, only 3 had FMS. I keep in touch with all of them to see what improvements they are noticing. My sister-in-law was the most skeptic (she doesn't have FMS) and she can't believe the improvements she is having with her pain and tightness in her neck. Her massage therapist can't believe the improvements in her neck, back and shoulders. Is it possible that I am the only person with FMS/CFS to recover after having the Atlas Profilax? Michael Hane checked my atlas 2 weeks ago and it was in. Of all the treatments I have tried since I was ill for 6 years, this one was the safest and the only one that worked. Good luck.

Lena

 

[Wayne]

Symptom Improvement After Atlas Profilax

I posted the following symptom improvements on a post at ProHealth a couple years ago or so (a few months after having done the Atlas Profilax adjustment). I thought I would post them here for anybody who might be interested. I hate to think of where I would be today had I not had this done three years ago. -- Wayne
..........................................................

Symptom Improvements Since Atlas Profilax Treatment on 7-9-07

Primarily Neurological Symptom Improvements

Sensory Overload - 25-50%

Excessive Neuronal Firing - 25-50% (I feel Perque B-12 is very good for this also)

Anxiety – 25-50% (Didn’t even fully realize my levels of anxiety until they lessened significantly)

Vertigo / Neurally Mediated Hypotension – 25-50%

Environmental Illness (EI) / Multiple Chemical Sensitivity (MCS) – 25-35%

Cognitive Function / Ability to take make mental notes – 25-35%

Ability to Organize - 15-20%

TMJ (Moderate to begin with) - 20%-25%

Ability to relax – 25-35%

Severe adrenal exhaustion / dysfunction (which I’m fairly certain is neurological in origin) – approx. 25%

Sense of Balance – 25-50%

Sleep – approx. 15-20%

Primarily Physical Symptom Improvements

Physical / muscle strength – 25-30%

Viral overload symptoms – 50-75%

Digestion – 50%+

Generalized Pain and Headache reduction - 25-50%

Detoxification Capabilities – 25-50%

Postural Corrections, from my neck, down my entire spine to my hips, knees and even feet – I can’t even put a percentage on this – A growing sense of wholeness seems to pervade my entire postural structure. My chest cavity seems to have risen. When I walk these days, I feel like I’m almost gliding.

Overall energy level – approx. 10-25%

I feel taller and I am taller by 1/4"-1/2"

Spiritual/Energetic Improvements of Note

Overall Sense of Well Being – 25-50% (I especially notice this when I’m walking)

Greater sense of patience

Greater sense of rhythm

Feel less dense, a greater sense of fluidity

 

[Michael Dessin]

I think this is a pretty blanket statement that depends on so many unknowns. It may soon turn out that many of us have a disease that is CAUSED by a retrovirus. Therefore, anyone who does not have that retrovirus does not have the same disease. This does not mean they are not sick, it simply means they don't have the same disease.

If (once) causality is shown, the real definition of the illness might become clearer. Patterns might emerge that were previously burried under the vague and amorphous definitions of ME/CFS. Until that time, in my view it is dangerous and harmful to present this disease as something that we can recover from with enough effort or miracle treatments or whatever, when many of us clearly cannot.

What the heck...Nobody spoke of miracle treatments or put in enough effort to recover! Geez

Although it was a miracle that I got treatment when I did and it worked. However Im still not cured!

Anyways, my final decision on XMRV will be when I get tested...which will be soon as it seems the testing is becoming more accurate.

As for now I clearly see people with and without XMRV who are very sick..classic ME symptoms and labs so Im up in the air at this point.

 

[slayadragon]

What the heck...Nobody spoke of miracle treatments or put in enough effort to recover! Geez

Although it was a miracle that I got treatment when I did and it worked. However Im still not cured!

Anyways, my final decision on XMRV will be when I get tested...which will be soon as it seems the testing is becoming more accurate.

As for now I clearly see people with and without XMRV who are very sick..classic ME symptoms and labs so Im up in the air at this point.

The problem with these tests is that both the serology and the culture can give false negatives.

Apparently this virus goes into hiding in the "viral reservoirs," and thus cannot be found in the blood on occasion.

There was one Komaroff patient in the Lo et al study who had XMRV in two different years in the 1990s, but tested negative in 2010 (even though s/he was still sick).

I think all those people you mention who have ME but are testing negative for XMRV are going to end up being positive. Either that or XMRV is a red herring (which I sort of doubt).

The only reason for me to get the test is to prove to people that I have "real ME."

This is a little perverse though. I have boatloads of tests that show that I had all kinds of abnormalities that are characteristic of ME, and that normal people never have. And apparently you do as well, since Dr. Peterson said that yours (from when you were really sick) were the worst labs he'd ever seen.

On the other hand, at least 7% of healthy blood donors actually have XMRV. So my having that would prove nothing about whether my ME is real.

This is sort of an expensive test to get just as a public relations tool. I think I may hold off a bit, until I can get insurance reimbursement.

Best, Lisa

 

[Cort]

Dan Moricoli has bumped into someone who appears to have recovered or mostly recovered from ME/CFS. I may be able to get her email address. There was also someone in the CFS History Chronicle edition that the CFIDS Association put out a couple of years ago - fascinating project, slayadragon - good luck with it.

 

[BEG]

The ones I've talked to so far have done it very systematically and in ways with an overlap. Based on what I've seen so far, it seems to me that there will be some interesting insights to be gained.

But again, this is exploratory research. It's not designed to prove that we can recover from it. It's not even to suggest that other people with ME/CFS should do the same thing.

(And I certainly wouldn't suggest that they do what I've done. It was totally ridiculous.)

My hope is that if we can find out what factors people have addressed as they've recovered, researchers and doctors can learn more about the disease and thus develop better treatments for it.

Slayadragon,

Congratulations and thank you for your altruistic efforts. I wish you well.

Brown-eyed Girl

 

[slayadragon]

Dan Moricoli has bumped into someone who appears to have recovered or mostly recovered from ME/CFS. I may be able to get her email address. There was also someone in the CFS History Chronicle edition that the CFIDS Association put out a couple of years ago - fascinating project, slayadragon - good luck with it.

These would be great, Cort.

Thanks to all for your well wishes.

Best, Lisa

 

[Sinclair]

These would be great, Cort.

Thanks to all for your well wishes.

Best, Lisa

If you don't mind Lisa, how is your interviews project going on?