In the end, as with so much else, the fight against disease leads to Washington. There are big diseases with big lobbies, like AIDS, Alzheimer’s, cancer, diabetes and heart. Their millions of sufferers have associations and lobbies to push for federal research money and to shape its expenditure. Most have their celebrity backers, like Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and Mary Tyler Moore for diabetes.
Big lobbies mean big federal dollars, the attention of the National Institutes of Health in Bethesda, Md., and the Centers for Disease Control in Atlanta. If the disease is the kind for which a single or series of silver bullets can produce a cure, Big Pharma comes in with big funding, in the hope that it can develop a lucrative line of medicines, patentable for long-term profits.
Yet there is a vast archipelago of diseases as cruel in their impact, horrible to bear and crying out for research that is not sporadic, underfunded or, through ignorance, misdirected.
One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government, abetted by other governments, of choosing this name over the older and more commanding name, myalgic encephalomyelitis.
CFS is not about a name game. It is about debilitation lasting decades, essentially from inception to death. It is about years of lost living, terrible joint pain and total collapse, as the immune system more or less shuts down. It is like some great constricting snake that denies its victims the final convulsion.
Enter Sen. Harry Reid (D-Nev.). While he is not generally regarded as a man on a horse these days, to CFS sufferers he is a figure of hope. He has stood up for CFS research.
This is not because the Senate majority leader sought to know a lot about a hard-to-understand and terrible affliction, but because CFS was found in two clusters in his home state. The largest outbreak was at Incline Village, Nev. In New York state, there is a cluster too.
In the 1980s government scientists looked at these clusters, but refused to accord them the respect the suffering deserves. It was then that the name was changed; “fatigue” was less politically incendiary than myalgic encephalomyelitis.
Incline Village is significant because it shows that CFS is infectious, or that it has environmental causes. The thinking is that while clearly not having a strong transmission path, it does happen.
Recently a sufferer in England wrote to The Daily Mail, saying that her husband, who had cared for her for nearly 20 years, had become infected. This is particularly serious in England, where the medical establishment has insisted on treating the disease as a psychological disorder, despite recent research suggesting strongly that it is retrovirus XMRV.
Now, at last, two world-famous pathogen hunters, Anthony Fauci of NIH, previously seen as a debunker of CFS science, and Ian Lipkin, a celebrity pathogen hunter, are heading a major safari into the dark world of retroviruses.
For the first time, the loose global network of sufferers–nobody knows how many there are in the world, but in the United States there could be as many as 800,000—are beginning to apply political pressure.
Their plight is pitiable. The full horror of the disease is described in a paper by Deborah Waroff, a gifted New York writer who was stricken in July 1989. An energetic cyclist, skier, squash and tennis player, Waroff wrote in a paper for a Washington conference:
“My sickness began with a flu-like illness. After a week, thinking I was pretty much well, I went back to my ordinary activities, like tennis and my biking. A week later, I was sick again. This repeated several times that summer until I soon got to a point where I was never well again. I had classic symptoms. After a little activity I would just collapse, totally fold up. I also had symptoms like fevers, dizziness, upset tummy, swollen lymph glands and a new type of frequent headache. I had cognitive problems embarrassingly often, including dysphasia—putting the wrong words in sentences. I was often too weak to talk on the phone, or after five minutes of talking I would fold.”
In 2003, things got worse. But two years later, Waroff regained some of her life through the controversial treatment of ozone therapy. This treatment cannot be prescribed in most states. Allowed in New York, it is hard to come by and expensive. Some other countries, particularly Canada, have been more committed to fighting CFS and the use of ozone therapy.
Harry Reid, and others, there is more work to be done.
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Llewellyn,
Very insightful article on the horrible devastation caused by “orphan diseases,” those that you rightly point out have no magic bullet to cure and therefore no “big pharma” or “big academe” to pursue the necessary research and clinical trials. It’s shameful for a country with our medical distinctions.
Llewellyn,
Very insightful article on the horrible devastation caused by “orphan diseases,” those that you rightly point out have no magic bullet to cure and therefore no “big pharma” or “big academe” to pursue the necessary research and clinical trials. It’s shameful for a country with our medical distinctions.
You are among the first to report on the story behind the story. Thank you very much.
The story is deeper. Digging will be rewarded richly.
A good place to start might be _Osler’s Web_, if you haven’t already read it.
You are among the first to report on the story behind the story. Thank you very much.
The story is deeper. Digging will be rewarded richly.
A good place to start might be _Osler’s Web_, if you haven’t already read it.
I first became ill with CFS 18 yrs ago.
Three years ago, I started seeing a naturopath, who has been bringing me slowly back to health.
CFS is a horrific disease. Thank you for telling it like it is.
I first became ill with CFS 18 yrs ago.
Three years ago, I started seeing a naturopath, who has been bringing me slowly back to health.
CFS is a horrific disease. Thank you for telling it like it is.
Thank you for this article.
With best science pointing toward XMRV as you said, the next step should be immediate clinical trials. Antiretrovirals already approved for HIV+ patients have been shown to work against XMRV in vitro.
Some patients who are able to obtain them are already trying them, but in order for antiretrovirals to be available to all, clinical trials must be conducted and FDA approval fast-tracked.
Similar to the early days of AZT for AIDS, fundraising must be done to help patients obtain diagnosis and afford prescriptions. Also as in early days of HIV knowledge, strong moves must be made to protect the blood banks so we won’t have the “tainted blood” horrors of those days. Yes, XMRV has been shown to be transmissible by blood in rhesus macaques.
Thanks once again for your excellent work, bringing light to the situation of Myalgic Encephalomeyelitis/chronic fatigue syndrome (ME/cfs).
Thank you for this article.
With best science pointing toward XMRV as you said, the next step should be immediate clinical trials. Antiretrovirals already approved for HIV+ patients have been shown to work against XMRV in vitro.
Some patients who are able to obtain them are already trying them, but in order for antiretrovirals to be available to all, clinical trials must be conducted and FDA approval fast-tracked.
Similar to the early days of AZT for AIDS, fundraising must be done to help patients obtain diagnosis and afford prescriptions. Also as in early days of HIV knowledge, strong moves must be made to protect the blood banks so we won’t have the “tainted blood” horrors of those days. Yes, XMRV has been shown to be transmissible by blood in rhesus macaques.
Thanks once again for your excellent work, bringing light to the situation of Myalgic Encephalomeyelitis/chronic fatigue syndrome (ME/cfs).
I started having noticeable CFS symptoms at age 8 and did not become fully disabled until age 48. Luckily I recognized that I was sick at an early age even when everyone else thought I was a hypochondriac and so I took extra special care with diet and exposures to chemicals (as I had Multiple Chemical Sensitivities, which so often accompanies CFS).
When I became totally disabled 7 years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse. No wonder so many people with CFS commit suicide. If your culture has little to offer in terms of a safety net and the social networks we worked so hard to establish (you know the ones the medical community tells you to create to maintain your health) are not there and we can’t care for ourselves, some people are left with no hope for survival.
Also, this condition negatively impacted my ability to earn a living over the years and so my social security payment is far less than it might have been had I been healthy. I know I am not the only one in this predicament. Small benefits, absent spouse, disappeared friends, family in denial. Everyone wanting to blame the victim.
There is more work to be done on all fronts.
I started having noticeable CFS symptoms at age 8 and did not become fully disabled until age 48. Luckily I recognized that I was sick at an early age even when everyone else thought I was a hypochondriac and so I took extra special care with diet and exposures to chemicals (as I had Multiple Chemical Sensitivities, which so often accompanies CFS).
When I became totally disabled 7 years ago, because I had not announced my illness previously, nearly everyone I knew figured the illness was in my head. They were aided and abetted with this sort of reasoning based on how the majority of medical establishment and media had treated CFS. Like many with CFS, I lost all of my companions and my spouse. No wonder so many people with CFS commit suicide. If your culture has little to offer in terms of a safety net and the social networks we worked so hard to establish (you know the ones the medical community tells you to create to maintain your health) are not there and we can’t care for ourselves, some people are left with no hope for survival.
Also, this condition negatively impacted my ability to earn a living over the years and so my social security payment is far less than it might have been had I been healthy. I know I am not the only one in this predicament. Small benefits, absent spouse, disappeared friends, family in denial. Everyone wanting to blame the victim.
There is more work to be done on all fronts.
Thank you for writing about this. There is an urgent need for more media attention on this debilitating illness, and the rest of the world is looking to Washington to take a lead. The cover-up in the UK has been remarkable by its callousness and thoroughness – they simply deny the illness is real; an approach that has lead to a particularly high suicide rate for patients.
I became ill while working on projects to improve education in Rwanda and DR Congo four years ago. I am now totally unable to work. Nearly housebound, I have also been unable to return to my home in the US because of the cost and inaccessibility of health care/health insurance in my situation.
Thank you for writing about this. There is an urgent need for more media attention on this debilitating illness, and the rest of the world is looking to Washington to take a lead. The cover-up in the UK has been remarkable by its callousness and thoroughness – they simply deny the illness is real; an approach that has lead to a particularly high suicide rate for patients.
I became ill while working on projects to improve education in Rwanda and DR Congo four years ago. I am now totally unable to work. Nearly housebound, I have also been unable to return to my home in the US because of the cost and inaccessibility of health care/health insurance in my situation.
If funding were directed to those who are accurately and rightly fighting for this we could get to the bottom of it much cheaper in the long run. As a sufferer now for 15 years some names I know who are easily found on the WWW of noteworthy are these three:
http://www.wpinstitute.org/
or
http://molinterv.aspetjournals.org/content/10/3/120.full
http://www.nightingale.ca/index.php?target=aboutdrhyde
http://www.drmyhill.co.uk/
These three have fought relentlessly against the tide for the sake of patients and have realised the seriousness of the illness and are trying to prevent the aweful ramifications. Below is two others Public Relations officers attempting give ME/CFS sufferers a life.
http://www.pandoranet.info/
http://www.forums.aboutmecfs.org/showthread.php?3859-UK-documentary-What-about-ME
If funding were directed to those who are accurately and rightly fighting for this we could get to the bottom of it much cheaper in the long run. As a sufferer now for 15 years some names I know who are easily found on the WWW of noteworthy are these three:
http://www.wpinstitute.org/
or
http://molinterv.aspetjournals.org/content/10/3/120.full
http://www.nightingale.ca/index.php?target=aboutdrhyde
http://www.drmyhill.co.uk/
These three have fought relentlessly against the tide for the sake of patients and have realised the seriousness of the illness and are trying to prevent the aweful ramifications. Below is two others Public Relations officers attempting give ME/CFS sufferers a life.
http://www.pandoranet.info/
http://www.forums.aboutmecfs.org/showthread.php?3859-UK-documentary-What-about-ME
For “Washington” read “The World”.
For “Forgot” read “Concealed”
Dr John H Greensmith
ME Free For All.org
Bristol, UK
For “Washington” read “The World”.
For “Forgot” read “Concealed”
Dr John H Greensmith
ME Free For All.org
Bristol, UK
PLEASE!!!!! STOP…the political and medical arrogance and do something Washington. Did HIV-AIDS teach politicians, acedemia and scientists a lessson that appears to be repeating itself…in much slower motion
PLEASE!!!!! STOP…the political and medical arrogance and do something Washington. Did HIV-AIDS teach politicians, acedemia and scientists a lessson that appears to be repeating itself…in much slower motion
Washington didn’t so much forget it – they were never told. The CDC swept it under the carpet, despite the fact that their main raison d’etre was to investigate and sort out epidemics of new diseases before they took hold. Now, because of the CDC’s wrongdoings, there are upwards of 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back. To sufferers, it was always a virus. It has taken a private effort, not state-funded, to pin it down. Let’s hope that Washington will put serious money where it’s needed and not with the pro-psychiatry CDC.
Washington didn’t so much forget it – they were never told. The CDC swept it under the carpet, despite the fact that their main raison d’etre was to investigate and sort out epidemics of new diseases before they took hold. Now, because of the CDC’s wrongdoings, there are upwards of 1 million people affected in the USA and possibly 17 million worldwide. Most of these people are too sick to stand up for themselves, to fight back. To sufferers, it was always a virus. It has taken a private effort, not state-funded, to pin it down. Let’s hope that Washington will put serious money where it’s needed and not with the pro-psychiatry CDC.
Thank you so much for writing this article. I am from the UK and have been ignored by the medical establishment for 32 years, even though I was diagnosed with M.E. not the later travesty CFS. Any support for the millions of us suffering world wide is desperately needed.
It’s worse than that: CFS/M.E. (also known as “CFIDS” with the ID being immune dysfunction) is a Neuro/Endocrine/Immune problem… and because most people can’t pronounce this much, let alone conceive it, let me tell you… Once you have this illness, all the gene switches are beyond your control. Most people who have this become hermits because they are desperately trying to avoid a cascade of health hells, which can start with ONE TRIGGER. An attack can start with ONE MOLECULE (smell, humidity, anything which would trigger processing by an immune system on Red Alert all the time) which sets off the immune system, OVER WHICH A HUMAN HAS NO CONTROL. From there it cascades to the endocrine system — our cell message signallers — and on to the neurological system, causing us to not be able to use our hands or walk or even get up. That’s what this is like. You end up eating the same four foods everyday, because they don’t set off all the bells and whistles that put you down in pain. You can’t go anywhere, you can’t do much of anything, because even moving a muscle can set this off. All this, and insurance companies have denied benefits, leaving most of us IN POVERTY on top of this horrendous hell, with no one to speak for us. Please HELP!! And go to http://www.ncf-net.org for more information. Thank you.
Thank you Llewellyn for this very well done article on a devastating illness and what it can do to healthy,active,hardworking people in the prime of life.More often now in children also.
I really don’t know anything about the effect of ozone therapy but at any rate most of us could not afford it.
Please keep up the good work on this nightmare that should NEVER have been able to progress this far.
Sincerely Teri Cordaro ~ sick 14 years,housebound 4 years
VERY well done
Thank you Llewellyn for this very well done article on a devastating illness and what it can do to healthy,active,hardworking people in the prime of life.More often now in children also.
I really don’t know anything about the effect of ozone therapy but at any rate most of us could not afford it.
Please keep up the good work on this nightmare that should NEVER have been able to progress this far.
Sincerely Teri Cordaro ~ sick 14 years,housebound 4 years
VERY well done
I feel so lucky! Funny comment for someone who has myalgic encephalomyelitis and who is currently living like an unburied corpse. Since January of this year, I have done virtually nothing except basic bodily functions like breathe, lie on the couch, and read books. For a woman who has been a lifelong athlete, this is torture.
Why am I lucky? I’ve only been trapped in this illness for the past 9 months, not for decades like some folks. I’ve accessed the information about XMRV and have tested positive. I will be able to start antivirals immediately. I am going to be able to take advantage of the increased medical-political interest in the treatment and triumph over this acutely debilitating disease.
Yes, it is beyond criminal that this horrible disease has gotten NO attention or funding from the Feds. The CDC has done everything over the past three decades to downplay this disease – reasons unknown. And there are millions of us sick in the US, except because the CDC did NOT do their job in finding out the true numbers of real ME/CFS sick, we don’t have a solid idea of those numbers. The CDC also damaged the first Retrovirus replication study back in the 1980’s and ensured that NO further funding by NIH be done for this line of Retrovirus research. Why? Good question and soon we will all find out just why the CDC has done everything possible to “hide” the ME/CFS sick and the reasons for our disease. For great background see Hillary Johnson’s great book, Osler’s Web or http://www.oslersweb.com for the best and most thorough background on this disease and the politics and games played by those within the CDC and other Federal health orgs to damage anything related to ME/CFS research. Very interesting. Soon all of this ugly stuff will be out into the public and when the public finds out how it impacts on THEM, hell will break lose.
My name is Heidi Bauer and I read your blog yesterday when my good friend Andrea Whittemore sent it to me. It is being circulated on the FB pages of CFS patients the last few days. Thank you so much for bringing attention to our difficulties. I have suffered with CFS for 15 years after a mono onset. The last 3 years I have been involved as a patient advocate because I’m one of the people who can actually get out of bed and do something productive now and then, although working would be entirely out of the question. I have a set of triplets who are now 7. During a seeming remission in CFS, my husband and I thought one child would be a good idea. We were blessed and surprised about having 3. My concern now with XMRV is that there is potential that my husband or children could get sick as well. So, I am very, very proactive in reading and understanding the research and politics at play. I’ll admit, I’m far more interested in the research though. The politics seems even more confusing as to the inhumanity of it all. One of the most concerning things for many patients is that we can’t trust the CFIDS Association of America because they have been so close to the very people who have kept us ill all these years, namely Bill Reeves. But, when government looks to someone to ask regarding research and funding, they are close at hand. The people truly responsible for a turning point are Annette Whittemore and Dr. Judy Mikovits at the Whittemore Peterson Institute. http://www.wpinstitute.org. I was able to meet with both of them this month when I went to Reno to accept an award they presented to me as their outstanding advocate. I could talk about both of them for paragraphs, but won’t. I will simply say they are both amazing, incredibly genuine women with the sole purpose of helping CFS patients and others with neuroimmune issues get better. Very strong women. Incredibly intelligent. I admire them both.
I’d like to offer you my help if there is anything you need at all in getting people on your show to talk about CFS or any information you are not clear about. I’m pretty well versed on the research and the players involved. Knowing Andrea, Annette and Judy helps me considerably, as well as a very bright friend with ME from the UK who discusses the science with me. I also know a few of the older advocates who keep me well informed about the powers and politics at play over the years. I am also part of a new study Dr. Mikovits is doing on families. I should know in a few weeks if I am positive for XMRV, or it’s kissing cousin PMRV that the NIH found in CFS patients. I plan on keeping the result quiet though. When it finally breaks to the public that this is an infectious disease that will affect not only gay men and drug addicts, but the young, the old, the virgins and the infidels as well, there is bound to be some public backlash and fear. They have found the retrovirus in saliva, although that does not mean transmitted by saliva. They find HIV in saliva as well. But, it is very hard to explain the 5 major US outbreaks, one of them including 60 children, if this is not at some point as easy to get as mono. So, it is better in some ways for people to hide their XMRV status for now I think.
Again, if there is some way that I can be useful, please let me know. I always think that being near Washington, DC should permit me to be more active in getting the right information out there, but so far, I have just attended some FDA blood safety meetings and the CFS Advisory Committee Meetings that for the most part have proved useless in our plight. We keep trying though.
I am so glad something happens now. This illness is more than a nightmare and doctors need to be educated asap as most of them even don’t know about it or don’t see it as an illness. My father caught a flu like virus in Africa during WWII which made him bed bound for 2 month and from then on he had been in pain for the rest of his life. He was always very tired…totally exhausted. He died 25 years ago with prostate cancer. I am in this state since I was 12…now I am 53. I had all illnesses you can imagine. Always mumps like swellings…Epstein Barr. My mother has it as well…but she got it late. She is now 84 and has it since ca. 20 years. My son started 3 years ago with pain and exhaustion. My second husband…married to me since 8 years is in pain since 1 1/2 years now. I am sure this XMRV runs in our family since WWII when my father got infected. And I am sure it is contageous.
We all…Millions of people are desperately in need of help. Who the hell is responsible for this? We all lost our lifes…we suffer every day and night because of terrible ignorants out there. This life is not worth living. It is like dying every day…but you never do and it goes on and on with no end in sight. I feel betrayed trough people who ignored this illness.
Thank you so much for this wonderful article.
We have been fighting so hard to have our illness recognised and money put into medical research. In the UK we are treat as psychiatric cases with no money at all coming from the government, all our medical research money in generously donated by the patients and their families. It’s not enough we need help very badly.
You bring us hope with your writing.
Please don’t let us be forgotten again.
Thank you.
How we failed a NC child and a family that fought for his rights to get the best medical care this country had to offer.
http://www.bringingryanhome.com
A good question to ask Washington is why it has fallen behind in taking precautions for the sake of the blood supply? Canada, Australia, New Zealand, the United Kingdom and Malta have already banned Chronic Fatigue Syndrome patients, but the most the American government can do is discourage blood donation?
Did you know there were warning against blood donation due to “unknown pathogens” printed with the Canadian Consensus Criteria in 2003?
Yes, that would be the same criteria that was used to define CFS patients in the WPI study in October 2009.
How many more years is the government going to sit on this without doing anything?
How many more lives is the government going to risk destroying while the band plays on, again?
Oops, I did it again only works for Britney Spears.
A good question to ask Washington is why it has fallen behind in taking precautions for the sake of the blood supply? Canada, Australia, New Zealand, the United Kingdom and Malta have already banned Chronic Fatigue Syndrome patients, but the most the American government can do is discourage blood donation?
Did you know there were warning against blood donation due to “unknown pathogens” printed with the Canadian Consensus Criteria in 2003?
Yes, that would be the same criteria that was used to define CFS patients in the WPI study in October 2009.
How many more years is the government going to sit on this without doing anything?
How many more lives is the government going to risk destroying while the band plays on, again?
Oops, I did it again only works for Britney Spears.
Thank you Mr. King! I appeared twice on CNN’s LKL way back in 1990 and 1991 and i compared this vicious disease to a “Rodney King style beating, each and every day of my life!”
and Larry’s phone lines lit up like a Christmas tree from all over the world! YOU, 20 years later, are the FIRST major D.C writer to tell the truth about such a brutal condition. THANK YOU for that. the previous writers have all told the public about how nasty our government has been towards such very, very sick people. Please check out our website
at http://www.rescindinc for more information. Thanks again. TMH
thank you for this article FINALLY. 1991 M.E. survivor started with a flu unlike any I had prior or after left mostly house/bed confined, had to stop work, then damaged from pyshciatric medications & others for life repeatedly, psyc med’s for a neuro illness. I didn’t think I would live through M.E., now all my muscles & ligments are shorted and stiff, I have generalzied dystonia, dyskenisa, myolcolonic dystonia, tremors, seizures from the drugs. in stead of helping me, those involved left covered for the extesnive damage instead. I didn’t think I would be able to keep living wiht M.E. it’s always been severe. How I am alive today is beyond my comprehension….
Thank you for your article.
The CDC Cover up must end. This is criminal what is taking place.
The US is in great risk as this epidemic continues to take the lives of millions. The tragedies and the suffering that befall ME/CFS victims, is so immense. It is hard to put into words just how someone with ME/CFS suffers for it is unlike any other illness that has ever existed. ME/CFS robs people of their life and of their very being. It destroys a person on every level. Patients were once healthy members of society but are now no longer to engage in life. Many patients are completely bed ridden and unable do to the simplest tasks healthy people take for granted. Anything a patient tries to do is a monumental undertaking.
The NIH, FDA and Harvard replicated the findings and found XMRV in 87% of CFS
patients. The CDC tried to without the publication and delayed the release of these findings for months. The CDC still cannot replicate the study after the NIH, FDA, Harvard, Cleveland Clinic, National Cancer Institute and WPI have been able to find XMRV (HGRV) in high numbers of CFS patients. The news was published in over 250 newspapers including the headline news in the Wall Street Journal Aug 24, 2010 issue.
Yet, they still have not banned blood donations of patients with CFS nor are the American people warned about the blood supply risk. Beside XMRV being found in patients with CFS patients are suffering from infections such as HHV-6a, CMV, mycoplasma, immune and neurological problems and have untreated for over 25 years. The suffering that someone with CFS endures is catastrophic.
For over 25 years the CDC has been ignoring science that people with CFS are suffering as bad as someone with late stage Aids (Dr. Loveless 1995).
XRMV is a retroviral that cause’s permanent immune dysfunction, neurological problems and death. The CDC has for over 25 years labeled people with CFS as having psychological problems while scientists have been proving patients suffer with
Symptoms much like late stage aids and worse than congestive heart failure (Komaroff).
We need help now- Please- people are suffering a slow death and people are going to die now that it’s going on 25 years or more without treatments. Also, how can we find out about where to go for Ozone treatments in NY?
The suffering that someone with CFS endures is catastrophic. Patients need help NOW. Please continue to report on the truth about what is going on. Thank you. Carol Geraci
Thank you for a great article. I have been using Monolaurin (a derivative of coconut oil) and Sambucus by Nature’s Way (extract of Elderberry) to treat my CFS. They are both clinically proven to prevent the replication of viruses. I have had excellent results. There are no side effects. I hope this helps you.
Thank you for a great article. I have been using Monolaurin (a derivative of coconut oil) and Sambucus by Nature’s Way (extract of Elderberry) to treat my CFS. They are both clinically proven to prevent the replication of viruses. I have had excellent results. There are no side effects. I hope this helps you.
The woman you speak of, Deborah Waroff is my cousin. I can atest for the fact since aquiring CSF her life has changed altoghter. Not only is she unable to enjoy the physical activities that fulfilled her, but she is limited in the hours she is able to work and provide for herself. Her life has been a rollar coaster ride for some years now. There is nothing mild about CSF. I have watched my Cousin try to be brave while having horrible migrain headaches, overall fatigue and side affects from too many prescriptions that most likely work against each other. I can say however, that since she started Ozone treatments in New York, there has been a definite improvement in her both physically and emotionally.
This is a costly treatment and if given more attention, many others could benefit from it, and possibly the treatment could become affordable and possible for many who suffer from this “silent terror.”
Thank you for bringing desperately-needed attention to this illness. I developed CFIDS in 1983, after a severe viral illness, one that I may have contracted at Brigham and Womens Hospital in Boston, where I had just spent several days in an unsuccessful attempt to stop premature labor. Or perhaps it was the virus that caused the labor? In any case, I went from being one of the arrogant healthy to subsisting in the netherworld of those must cope with misunderstood, unrecognized, debilitating illness, one that in those days was pretty universally dismissed as psychogenic. After this I was only able to work part-time and could do little else My initial dx was fibromyalgia (because it was a rheumatologist I ended up being referred to for the chronic pain that was part of the syndrome). In 1999 a lump behind my knee proved to be an aggressive form of sarcoma. I was extremely fortunate in the care I received, which included quarterly body scans that two years later revealed lung lesions– these turned out to be an atypical form of lung cancer. (Which, although devastating at the time, was actually good news: worse would have been, metastatic sarcoma, the more likely possibility). Amazingly, the multi-focal (in both lungs) cancer, still very small, has remained dormant since then. Nobody knows why. Cancer is an unpredictable and barely understood illness–like CFIDS/ME–but oh how differently the world treats the two diagnoses. The attention and care I received–from the medical world as well as from friends and family– after diagnosis with the magical word “cancer” was dramatically different. A striking example of the power of words.
I'm often envious of people with cancer. They are treated with compassion and respect and even more so, their disease is treated.
Dying would be so much easier. It's sad, but so many people afflicted with this horrible disease have chosen this route to a cure. I'm going on 26 years being one of the walking dead and 2 years in I almost took this path too.
Help.
Thank you for continuing to report on this issue. You are much appreciated and very informative.