AngelM
Senior Member
- Messages
- 150
- Location
- Oklahoma City
But three years ago, I began to hear about new ME/CFS research being conducted at Stanford University and the University of San Diego and other respected universities and, for the first time, my hopes soared. DNA had evolved a thousand times since my diagnosis, and surely the answer would be found there. So I began to follow the research, and study White Papers and Medical Journals I didn’t understand. I even enrolled inna class in Statistical Research so I could learn how to separate good research from bad. I joined CFS forums, participated in a support group, and wrote articles about CFS for publication. But though I have learned a great deal about ME/CFS over the past few years, I also have begun to believe that this disorder has taken on a life of its own. With all the new symptoms and subsets of diseases being added to the CFS mix, I no longer recognize it as the disease I was diagnosed with 18 years ago.
With so many protocols, miracle cures, and opinions currently floating around on social media, it seems like CFS has become an uncontrolled, multi-headed monster with regenerating tentacles that reach out in bizarre directions. And with researchers seemingly regressing to the study of Lyme Disease, mold, and even mass conversion disorder as a cause for CFS, I can’t help but wonder if we are going backward, not forward. Will this illness soon revert to being called “Yuppie Flu,” rather than Chronic Fatigue Syndrome?
Treatments have increased both in number and complexity over the past fifteen years. Which, for me, is very confusing. Just as an example, the issue of diet as a possible treatment for CFS has gotten totally out of control. Diet is an important component in the management for any illness, but diet recommendations for CFS are all over the place. This quote caught my attention:
“One of the most common deficiency is choline because a high fat diet eg cheese (pizza is the worst over 200g of cheese on one pizza), milk, yoghurt, icecream, then fried foods in cooking oil...”
So is a low fat or vegan diet the answer for CFS patients? And does yogurt, the mainstay for those of us with IBS (a common symptom presented by CFS sufferers over the past thirty years) actually contribute to our disease by depleting choline? And how does any of that information correlate with the fact that Keto, a diet of high fat and no carbs, is considered by some to be the new miracle cure for CFS. In regard to choline: Is a choline deficiency common to all CFS victims? If it is, choline is definitely worthy of further evaluation as a diagnostic marker. But if it is not a condition common to 98 percent of patients presenting with CFS symptoms, then a diet that increases choline, though efficacious for some, only complicates things for the rest of us.
Methylation, a protocol currently recommended for CFS, became popular as a result of the once-promising MTHR studies. The MTHR test is expensive and far from routine. But I insisted on having it done, and I’m sure many others with CFS did the same, only to find that methylation, which at last count involved taking 15 different supplements on a daily basis, works the same for anyone who breathes air on this toxic planet. And though methylation is perhaps a good idea, it shouldn’t be confused as a miracle treatment for CFS.
Which brings me to supplements. Realistically, how many supplements can a person take in one day? My medicine cabinet is bulging with them to the point that I can’t remember which is for what. But, like everyone else, I hear about a new supplement that might help my CFS symptoms and I rush to buy it. Overall, it seems that the only one truly benefitting from the alphabet soup of expensive supplements in my medicine cabinet is the drug company.
So, once again I find myself frustrated with the direction this disease is taking me. I also find myself again doubting that there will ever be a cure, which leads me back to putting my head in the sand in order to avoid more disappointment.
My question is how can a cure possibly be found for a disorder that has no commonality of treatment or symptoms among its victims? It would be like finding a one-size-fits-all solution for RA, cancer, diabetes, and Parkinson’s disease. For a disease to be considered real, snd have the possibility of a real cure, doesn’t it first have to be narrowed to its lowest common denominator—a definition that applies to 98.9 percent of the affected population. Don’t patients need to present as more alike, than different? Because currently that doesn’t seem to be the case with CFS—-Which may mean that the criteria for CFS diagnosis needs to be revisited by researchers. And for purposes of research, those who don’t fit a more narrowly-defined criteria (whatever that might be), as well as, patients who present with subsets of symptoms that fit into other disease categories, need be separated out of the pool of CFS research participants. I am not a scientist or a medical doctor, so I may be totally off base here, (wouldn’t be the first time) but as long as CFS continues to grow more complex, comorbid, and inclusive in its definition, how can researchers ever hope target a cause and/or find a cure?
With so many protocols, miracle cures, and opinions currently floating around on social media, it seems like CFS has become an uncontrolled, multi-headed monster with regenerating tentacles that reach out in bizarre directions. And with researchers seemingly regressing to the study of Lyme Disease, mold, and even mass conversion disorder as a cause for CFS, I can’t help but wonder if we are going backward, not forward. Will this illness soon revert to being called “Yuppie Flu,” rather than Chronic Fatigue Syndrome?
Treatments have increased both in number and complexity over the past fifteen years. Which, for me, is very confusing. Just as an example, the issue of diet as a possible treatment for CFS has gotten totally out of control. Diet is an important component in the management for any illness, but diet recommendations for CFS are all over the place. This quote caught my attention:
“One of the most common deficiency is choline because a high fat diet eg cheese (pizza is the worst over 200g of cheese on one pizza), milk, yoghurt, icecream, then fried foods in cooking oil...”
So is a low fat or vegan diet the answer for CFS patients? And does yogurt, the mainstay for those of us with IBS (a common symptom presented by CFS sufferers over the past thirty years) actually contribute to our disease by depleting choline? And how does any of that information correlate with the fact that Keto, a diet of high fat and no carbs, is considered by some to be the new miracle cure for CFS. In regard to choline: Is a choline deficiency common to all CFS victims? If it is, choline is definitely worthy of further evaluation as a diagnostic marker. But if it is not a condition common to 98 percent of patients presenting with CFS symptoms, then a diet that increases choline, though efficacious for some, only complicates things for the rest of us.
Methylation, a protocol currently recommended for CFS, became popular as a result of the once-promising MTHR studies. The MTHR test is expensive and far from routine. But I insisted on having it done, and I’m sure many others with CFS did the same, only to find that methylation, which at last count involved taking 15 different supplements on a daily basis, works the same for anyone who breathes air on this toxic planet. And though methylation is perhaps a good idea, it shouldn’t be confused as a miracle treatment for CFS.
Which brings me to supplements. Realistically, how many supplements can a person take in one day? My medicine cabinet is bulging with them to the point that I can’t remember which is for what. But, like everyone else, I hear about a new supplement that might help my CFS symptoms and I rush to buy it. Overall, it seems that the only one truly benefitting from the alphabet soup of expensive supplements in my medicine cabinet is the drug company.
So, once again I find myself frustrated with the direction this disease is taking me. I also find myself again doubting that there will ever be a cure, which leads me back to putting my head in the sand in order to avoid more disappointment.
My question is how can a cure possibly be found for a disorder that has no commonality of treatment or symptoms among its victims? It would be like finding a one-size-fits-all solution for RA, cancer, diabetes, and Parkinson’s disease. For a disease to be considered real, snd have the possibility of a real cure, doesn’t it first have to be narrowed to its lowest common denominator—a definition that applies to 98.9 percent of the affected population. Don’t patients need to present as more alike, than different? Because currently that doesn’t seem to be the case with CFS—-Which may mean that the criteria for CFS diagnosis needs to be revisited by researchers. And for purposes of research, those who don’t fit a more narrowly-defined criteria (whatever that might be), as well as, patients who present with subsets of symptoms that fit into other disease categories, need be separated out of the pool of CFS research participants. I am not a scientist or a medical doctor, so I may be totally off base here, (wouldn’t be the first time) but as long as CFS continues to grow more complex, comorbid, and inclusive in its definition, how can researchers ever hope target a cause and/or find a cure?