Saturday, July 31, 2010
Tuesday, July 20, 2010
What's In A Name? A misdiagnosis perhaps?
What's in a name? A lot it would seem.
The more I think about my diagnosis of Fibromyalgia, and the more I think about my other diagnosis of Chronic Fatigue Syndrome, the more I wonder about both diseases. Depending on who you speak to, you'll realise that not all doctors even refer to these conditions as "diseases". Some doctors refer to FM & CFS as syndromes. Some doctors refer to them as mental illnesses rather than neurological conditions, which is completely incorrect. Then you have the doctors who don't refer to them as anything because they unfortunately believe neither FM or CFS exist, apart from in their patient's head.
Doctors did not come up with the name for CFS, just as they didn't come up with the name for Fibromyalgia. The CDC (United States) were responsible for naming these two (and often overlapping) medical conditions. Heresay from a lot of different sources say that CDC employees still often joke about both conditions. They've always joked about CFS being "The Yuppee Flu" however apparently, they call Fibromyalgia "The New Yuppee Flu". As I said, this is just heresay...however when you look at the CDC's research about both conditions, and when you listen to the attitudes of Reeves and other CDC staff members, you do tend to quite easily beleive the rumours about their "Yupee Flu" comments, or jokes rather. I personally can imagine these idiots in their little white coats joking about both FM & CFS while burying and ignoring every piece of scientific data, research and statistics they receive about both conditions, but that's just me.
The CDC renamed Myalgic Encaphalomyelitis (M.E.) in the 1980's after the Lake Tahoe, Nevada outbreak - they called it Chronic Fatigue Syndrome. The people in Nevada unmistakably had (have) M.E. The MRI findings and other medical testing each patient underwent proves this. Unfortunately though, M.E. stuck like glue and has caused mass confusion since. CFS is often referred to as CFS/ME. In other words, both conditions are referred to as the same disease and this is absolutely not the case. The majority of patients diagnosed with CFS/ME are never told to go for an MRI, not before their diagnosis or after it. The reason for this in Australia is because of the restrictions the government has put on diagnostic and medical testing for not only CFS patients, but FM patients as well. That's right, the government have put a limit on what tests CFS/FM patients can and can't have. Very, very disturbing. Anyway, in order to receive an accurate diagnosis of Myalgic Encephalomyelitis, the patient must fit certain diagnositc criteria. This includes distinct lesions on the brain. Therefore, patients with a diagnosis of CFS/ME who have not been sent for an MRI have been misdiagnosed. This is a certainty. I'm sorry, but there is no way around it.
To be diagnosed with CFS/ME - depending on which of the 11 ways you can be diagnosed, a patient simply needs to report feeling fatigued for 6 months or more. This is enough for a lot of doctors to make the diagnosis. In Australia, the diagnostic guidelines for CFS are the same as Canada's. To be diagnosed with FM, a diagnostic test using "Tenderpoints" is given. If a patient reports more than half the 18 tenderpoints to be painful when pressure is applied, they are often diagnosed with FM. They are then told (like CFS) that all their other symptoms (including Depression and Anxiety) are due to their newly diagnosed, incurable disease. This diagnosis often happens when not every other medical condition has been ruled out.
For instance, my GP wanted me to go for an MRI. She was worried, and still is to my knowledge about the possibility of Multiple Sclerosis. When she told me she wanted me to go for an MRI (over a month ago) - I told her I didn't want to as at the time, I was sick and tired of spending all my time between doctors, pathology centres and x-ray places. I needed a break! She was fine with this and said that from then on, she would leave all care regarding my disease up to my specialist. My specialist feels there is no need for an MRI. Even though a diagnosis of FM or CFS should never ever be made until ALL other medical conditions have been ruled out...he doesn't feel the need for an MRI. He doesn't feel the need to send me for one? Or is it more accurately that according to government guidelines, he's not actually meant to send me for one? I personally suspect the latter given the facts at hand.
CFS/ME patients are being told they have M.E. when they don't. Fibromyalgia patients are being told they have Fibromyalgia when in a lot of cases, they don't. These diagnosis's for the most part are being made before other medical conditions are being ruled out. M.E is a potentially fatal disease...if someone with Myalgic Encephalomyelitis does too much, if they put too much strain on their heart by overexertion, they can and do die. M.E. patients are required to wear heart monitors so they can be extremely vigilant and aware of when they need to rest. Making sure you don't do too much when you have M.E is a matter of life and death...it only takes a tiny bit of research and 5 minutes reading to know that. It only takes 5 minutes (or less) worth of reading to know that CFS and M.E are two very different medical conditions. A lot of M.E patients don't even suffer fatigue. Fatigue is NOT even essential to the diagnosis of M.E!!! The CDC have not only caused mass confusion for CFS sufferers by linking the name to M.E but they've done an amazing amount of damage to M.E patients, especially severe M.E. patients who must wear heart monitors and stay close to their oxygen tanks!
I honestly understand why CFS and FM are often referred to as "wastebasket" diagnosis's. Some people refer to them as a diagnosis of "elimination" - I absolutely don't use that definition though simply because the majority of us have not had every other medical condition eliminated before our diagnosis. Any diagnosis of CFS/ME is incorrect - that's a fact. Unless a CFS patient has undergone testing for M.E (a condition which there are numerous medical tests for) and been diagnosed with M.E, then they don't have it. Myalgic Encephalomyelitis MUST be separated from CFS for the benefit of all involved. This won't happen unless the CDC pull their finger out though, which is unlikely to ever happen.
CFS and FM are real...I'm not saying they're not. To those of us who are sick, unable to leave the house or in some cases, bed...to those of us who are reliant on many medications, walking aides, wheelchairs...to those of us who suffer every single symptom of CFS and FM, our medical condition is extremely real. The friends we've lost, careers we've had to give up, ridicule and misunderstanding from those closest to us, and worst of all, the shit we've had to (and still do) put up with from our doctors, CFS and FM are real. Something that's stolen our lives from us has to be real. None of us asked to get sick, none of us choose to stay sick, simple as that. The fact is though we're all suffering from something the medical community DO NOT understand. They say they do, but they clearly don't.
Chronic Fatigue Syndrome and Fibromyalgia: Both named by the CDC. Both are serious diseases with ridiculous names that alter the public's perception of how sick we really are. Any research (including the XMRV link) to do with both are covered up by the CDC. Both diseases have suspicious restrictions on them in relation to diagnostic testing and even treatment. Both are neurological conditions being palmed off as psychiatric conditions. Another widely misunderstood condition (M.E.) was deliberately linked to CFS by the CDC...unfortunately advocacy groups ignore that fact and still use the CFS/ME terminology. Both diseases have diagnostic guidelines which make absolutely no sense. Both diseases DO cause immune dysfunction but this fact is also covered up and flat out denied by the CDC.
Both these diseases just don't make any bloody sense and on top of being sick day in, day out.....we're forced to live with this knowledge. We're forced to live with not only the physical and cognitive symptoms, but the misunderstanding and confusion about these diseases, not just among the general public - but among the medical community as well. No wonder we need to be our own medical advocates, THERE IS NOBODY ELSE.
So, what's in a name? You tell me.
Em
xoxoxo
The more I think about my diagnosis of Fibromyalgia, and the more I think about my other diagnosis of Chronic Fatigue Syndrome, the more I wonder about both diseases. Depending on who you speak to, you'll realise that not all doctors even refer to these conditions as "diseases". Some doctors refer to FM & CFS as syndromes. Some doctors refer to them as mental illnesses rather than neurological conditions, which is completely incorrect. Then you have the doctors who don't refer to them as anything because they unfortunately believe neither FM or CFS exist, apart from in their patient's head.
Doctors did not come up with the name for CFS, just as they didn't come up with the name for Fibromyalgia. The CDC (United States) were responsible for naming these two (and often overlapping) medical conditions. Heresay from a lot of different sources say that CDC employees still often joke about both conditions. They've always joked about CFS being "The Yuppee Flu" however apparently, they call Fibromyalgia "The New Yuppee Flu". As I said, this is just heresay...however when you look at the CDC's research about both conditions, and when you listen to the attitudes of Reeves and other CDC staff members, you do tend to quite easily beleive the rumours about their "Yupee Flu" comments, or jokes rather. I personally can imagine these idiots in their little white coats joking about both FM & CFS while burying and ignoring every piece of scientific data, research and statistics they receive about both conditions, but that's just me.
The CDC renamed Myalgic Encaphalomyelitis (M.E.) in the 1980's after the Lake Tahoe, Nevada outbreak - they called it Chronic Fatigue Syndrome. The people in Nevada unmistakably had (have) M.E. The MRI findings and other medical testing each patient underwent proves this. Unfortunately though, M.E. stuck like glue and has caused mass confusion since. CFS is often referred to as CFS/ME. In other words, both conditions are referred to as the same disease and this is absolutely not the case. The majority of patients diagnosed with CFS/ME are never told to go for an MRI, not before their diagnosis or after it. The reason for this in Australia is because of the restrictions the government has put on diagnostic and medical testing for not only CFS patients, but FM patients as well. That's right, the government have put a limit on what tests CFS/FM patients can and can't have. Very, very disturbing. Anyway, in order to receive an accurate diagnosis of Myalgic Encephalomyelitis, the patient must fit certain diagnositc criteria. This includes distinct lesions on the brain. Therefore, patients with a diagnosis of CFS/ME who have not been sent for an MRI have been misdiagnosed. This is a certainty. I'm sorry, but there is no way around it.
To be diagnosed with CFS/ME - depending on which of the 11 ways you can be diagnosed, a patient simply needs to report feeling fatigued for 6 months or more. This is enough for a lot of doctors to make the diagnosis. In Australia, the diagnostic guidelines for CFS are the same as Canada's. To be diagnosed with FM, a diagnostic test using "Tenderpoints" is given. If a patient reports more than half the 18 tenderpoints to be painful when pressure is applied, they are often diagnosed with FM. They are then told (like CFS) that all their other symptoms (including Depression and Anxiety) are due to their newly diagnosed, incurable disease. This diagnosis often happens when not every other medical condition has been ruled out.
For instance, my GP wanted me to go for an MRI. She was worried, and still is to my knowledge about the possibility of Multiple Sclerosis. When she told me she wanted me to go for an MRI (over a month ago) - I told her I didn't want to as at the time, I was sick and tired of spending all my time between doctors, pathology centres and x-ray places. I needed a break! She was fine with this and said that from then on, she would leave all care regarding my disease up to my specialist. My specialist feels there is no need for an MRI. Even though a diagnosis of FM or CFS should never ever be made until ALL other medical conditions have been ruled out...he doesn't feel the need for an MRI. He doesn't feel the need to send me for one? Or is it more accurately that according to government guidelines, he's not actually meant to send me for one? I personally suspect the latter given the facts at hand.
CFS/ME patients are being told they have M.E. when they don't. Fibromyalgia patients are being told they have Fibromyalgia when in a lot of cases, they don't. These diagnosis's for the most part are being made before other medical conditions are being ruled out. M.E is a potentially fatal disease...if someone with Myalgic Encephalomyelitis does too much, if they put too much strain on their heart by overexertion, they can and do die. M.E. patients are required to wear heart monitors so they can be extremely vigilant and aware of when they need to rest. Making sure you don't do too much when you have M.E is a matter of life and death...it only takes a tiny bit of research and 5 minutes reading to know that. It only takes 5 minutes (or less) worth of reading to know that CFS and M.E are two very different medical conditions. A lot of M.E patients don't even suffer fatigue. Fatigue is NOT even essential to the diagnosis of M.E!!! The CDC have not only caused mass confusion for CFS sufferers by linking the name to M.E but they've done an amazing amount of damage to M.E patients, especially severe M.E. patients who must wear heart monitors and stay close to their oxygen tanks!
I honestly understand why CFS and FM are often referred to as "wastebasket" diagnosis's. Some people refer to them as a diagnosis of "elimination" - I absolutely don't use that definition though simply because the majority of us have not had every other medical condition eliminated before our diagnosis. Any diagnosis of CFS/ME is incorrect - that's a fact. Unless a CFS patient has undergone testing for M.E (a condition which there are numerous medical tests for) and been diagnosed with M.E, then they don't have it. Myalgic Encephalomyelitis MUST be separated from CFS for the benefit of all involved. This won't happen unless the CDC pull their finger out though, which is unlikely to ever happen.
CFS and FM are real...I'm not saying they're not. To those of us who are sick, unable to leave the house or in some cases, bed...to those of us who are reliant on many medications, walking aides, wheelchairs...to those of us who suffer every single symptom of CFS and FM, our medical condition is extremely real. The friends we've lost, careers we've had to give up, ridicule and misunderstanding from those closest to us, and worst of all, the shit we've had to (and still do) put up with from our doctors, CFS and FM are real. Something that's stolen our lives from us has to be real. None of us asked to get sick, none of us choose to stay sick, simple as that. The fact is though we're all suffering from something the medical community DO NOT understand. They say they do, but they clearly don't.
Chronic Fatigue Syndrome and Fibromyalgia: Both named by the CDC. Both are serious diseases with ridiculous names that alter the public's perception of how sick we really are. Any research (including the XMRV link) to do with both are covered up by the CDC. Both diseases have suspicious restrictions on them in relation to diagnostic testing and even treatment. Both are neurological conditions being palmed off as psychiatric conditions. Another widely misunderstood condition (M.E.) was deliberately linked to CFS by the CDC...unfortunately advocacy groups ignore that fact and still use the CFS/ME terminology. Both diseases have diagnostic guidelines which make absolutely no sense. Both diseases DO cause immune dysfunction but this fact is also covered up and flat out denied by the CDC.
Both these diseases just don't make any bloody sense and on top of being sick day in, day out.....we're forced to live with this knowledge. We're forced to live with not only the physical and cognitive symptoms, but the misunderstanding and confusion about these diseases, not just among the general public - but among the medical community as well. No wonder we need to be our own medical advocates, THERE IS NOBODY ELSE.
So, what's in a name? You tell me.
Em
xoxoxo
Thursday, July 15, 2010
Friday, July 9, 2010
XMRV ... Start Listening, World.
This post will contain offensive language, so if four letter words offend you my advice would be to stop reading now. Usually I try to keep the "bad" language to a minimum in this blog however if I tried to keep swear words out of this post I'd be being dishonest with myself. I do tend to swear a bit when I'm angry.
Right now, along with countless other sick people around the world, I'm angry.
XMRV, for those who don't know, is a retrovirus. There are only two other human retroviruses. The first being HTLV (the Human T-lymphotropic virus which causes T-cell Leukemia and Lymphoma), the second being HIV which was discovered in AIDS patients in the1980's and the third being XMRV which was only recently discovered in 2006. XMRV stands for Xenotropic murine leukemia related virus. It is similar to both HIV & HTLV.
In 2009, researchers at the Whittemore Peterson Institute found a significant link between CFS/ME and the XMRV retrovirus. Now, I'm not saying every person with Fibromyalgia has CFS/ME - but according to my doctor, most (if not all) of us do. Some doctors see all three conditions as the same disease but hey that's a whole other post LOL. In over 95% of ME patients tested for XMRV, the result came up positive. Every single XMRV test they did for Fibro patients came up positive. Other researchers from other institutes have confirmed these findings. The CDC stopped (and still stop) this information from making it into the papers, instead the CDC release their own bogus reports which basically imply that XMRV does not exist.
The CDC deny these results. They used their own testing methods in patients with CFS/ME and 100% of the tests for XMRV came back negative. They've repeated these tests a few times...and they keep coming up negative. Why? Because they're DOING IT WRONG. They haven't tested using the same methods as the WPI and refuse to do so. The CDC are basically denying the link between XMRV and chronic diseases. They're saying the link doesn't exist. Not only did the CDC use blinded testing methods, they used a completely different patient group!! A TEST IS ONLY AS ACCURATE AS THE INTEGRITY OF THE SPECIMEN! To add insult to injury (pardon the pun) - the CDC released this statement not so long ago:
The above bullshit statement was released shortly after another press release stated that CFS/ME/FM patients had a significant decline in immune dysfunction. Can anyone smell a fucking cover up here???!! Almost all of us with FM/ME/CFS have either auto-immune or dysfunctioning immune systems. All of our specialists and doctors would disagree with the above statement just as we do. The difference is that to us (the people who suffer), the above statement is just adding to the ignorance among the public! It's just making it harder for us to get the awareness out there because what the CDC are basically saying is what they've always said..."CFS/ME isn't a real illness".
At the same time as the AIDS epidemic hit, CFS/ME hit. Back then everyone was calling it "Yuppie Flu" - just like today, people were getting sick and they just weren't recovering. Obviously it was spreading then as it's spreading NOW. The outbreak of this "flu" started in Nevada. Many, many doctors pleaded with the CDC to investigate why so many people were falling seriously ill...but the CDC did not do anything. They're still not doing anything over 20 years later. They covered it up then just like they're covering it up now. ME stands for Myalgic Encephalomyelitis. In the 80's, the CDC changed the name to Chronic Fatigue Syndrome. A lot of people believe (as I believe) that they changed the name to alter the public's perception of the disease.
Our life expectancies are 20 years shorter than our healthy friends and our healthy family members. Some of us have parents who will outlive us. Some of us won't be around to meet our grandchildren. As most of you know, I've only been sick with this for 4 and a half months...but I know people who've been sick with this for close to 40 years. A good friend of mine has been suffering for close to 20 years. The clock is ticking, luckily for all of us, the ticking is getting louder. SO LOUD that the CDC may just start hearing it. The XMRV virus (and CFS/ME/FM) are not airbourne...you won't catch it from breathing the same air we do. However the XMRV virus can be spread through sexual contact, blood and breastfeeding.
So.....to all of us women with healthy husbands/partners and children, well shit. Thanks for letting us know about those risks, CDC (note the sarcasm). In Australia and Canada, patients with CFS/ME/FM are no longer allowed to donate blood. Why? Because of the XMRV risk of course. See, it's not only the patients taking it seriously, it's the people in charge of our country's fucking blood supply! Are you beginning to see how crooked the CDC are now yet or what?
The similarities between AIDS and CFS/ME/FM are scary. There's no other word for it. From immune dysfunction to similar infections to the cognitive difficulties. The CDC would and do deny this...they continue to either mock or ignore every single piece of research published stating that CFS/ME have any immunological involvement. They've been good at bullshitting since the 80's and they're still doing it now, only now with all the new evidence and louder public outcries, their bullshit is becoming more and more apparent. I'd like to say it's laughable but it's not.
These retroviruses cause cancer, infections, neurological diseases and of course, immune disorders. All three retroviruses are permanent. Just as our diseases are permanent.
The more evidence found about the link between XMRV and our disease, the more it's looking like the cause of the diseases we suffer. That is simply undeniable. The CDC need to wake up and do the right thing here. People are dying every single day, and I'm not just talking about the people who commit suicide because they can't bear their illness anymore. I'm also talking about the people who "suddenly" stop breathing, who "suddenly" suffer a major heart attack, who "suddenly" have a stroke. These deaths ARE due to the person's illness but they are never documented that way which does an indescribable amount of harm and misjustice to the victim's family. It's so fucking wrong on so many levels and this cover up by the CDC is the reason why.
Now...if you're going to call me paranoid, then call almost every CFS/ME/FM patient paranoid. Call our doctor's who can't do a damn thing about this paranoid too. Call the widows and families caring for their sick loved one paranoid too. Actually wait, if you're going to call me paranoid, you must work for the CDC. Centre For Disease Control? - Now that is laughable. The only thing you lying bastards control is covering your own asses.
These diseases can be fatal. These diseases ruin lives, marriages, families. These diseases are so misunderstood, under-reported and ignored by the media that our own families don't even know how seriously ill we are. The general public have no idea...until they get sick. If the XMRV retrovirus is the cause as to why we got sick (which research suggests it is), and if that were to be made known to the world - then we will be able to access better treatment. Better medicines. Better health care. A better outlook - a better understanding of why we're so damn ill. A much better mental state due to all of the above.
So my question to the CDC is this: Who the fuck are you to deny us that?
On that note, I'll leave it.
Em
xoxo
Right now, along with countless other sick people around the world, I'm angry.
XMRV, for those who don't know, is a retrovirus. There are only two other human retroviruses. The first being HTLV (the Human T-lymphotropic virus which causes T-cell Leukemia and Lymphoma), the second being HIV which was discovered in AIDS patients in the1980's and the third being XMRV which was only recently discovered in 2006. XMRV stands for Xenotropic murine leukemia related virus. It is similar to both HIV & HTLV.
In 2009, researchers at the Whittemore Peterson Institute found a significant link between CFS/ME and the XMRV retrovirus. Now, I'm not saying every person with Fibromyalgia has CFS/ME - but according to my doctor, most (if not all) of us do. Some doctors see all three conditions as the same disease but hey that's a whole other post LOL. In over 95% of ME patients tested for XMRV, the result came up positive. Every single XMRV test they did for Fibro patients came up positive. Other researchers from other institutes have confirmed these findings. The CDC stopped (and still stop) this information from making it into the papers, instead the CDC release their own bogus reports which basically imply that XMRV does not exist.
The CDC deny these results. They used their own testing methods in patients with CFS/ME and 100% of the tests for XMRV came back negative. They've repeated these tests a few times...and they keep coming up negative. Why? Because they're DOING IT WRONG. They haven't tested using the same methods as the WPI and refuse to do so. The CDC are basically denying the link between XMRV and chronic diseases. They're saying the link doesn't exist. Not only did the CDC use blinded testing methods, they used a completely different patient group!! A TEST IS ONLY AS ACCURATE AS THE INTEGRITY OF THE SPECIMEN! To add insult to injury (pardon the pun) - the CDC released this statement not so long ago:
"One thing is certain at this juncture: there are no immune disorders in CFS patients".
The above bullshit statement was released shortly after another press release stated that CFS/ME/FM patients had a significant decline in immune dysfunction. Can anyone smell a fucking cover up here???!! Almost all of us with FM/ME/CFS have either auto-immune or dysfunctioning immune systems. All of our specialists and doctors would disagree with the above statement just as we do. The difference is that to us (the people who suffer), the above statement is just adding to the ignorance among the public! It's just making it harder for us to get the awareness out there because what the CDC are basically saying is what they've always said..."CFS/ME isn't a real illness".
At the same time as the AIDS epidemic hit, CFS/ME hit. Back then everyone was calling it "Yuppie Flu" - just like today, people were getting sick and they just weren't recovering. Obviously it was spreading then as it's spreading NOW. The outbreak of this "flu" started in Nevada. Many, many doctors pleaded with the CDC to investigate why so many people were falling seriously ill...but the CDC did not do anything. They're still not doing anything over 20 years later. They covered it up then just like they're covering it up now. ME stands for Myalgic Encephalomyelitis. In the 80's, the CDC changed the name to Chronic Fatigue Syndrome. A lot of people believe (as I believe) that they changed the name to alter the public's perception of the disease.
Our life expectancies are 20 years shorter than our healthy friends and our healthy family members. Some of us have parents who will outlive us. Some of us won't be around to meet our grandchildren. As most of you know, I've only been sick with this for 4 and a half months...but I know people who've been sick with this for close to 40 years. A good friend of mine has been suffering for close to 20 years. The clock is ticking, luckily for all of us, the ticking is getting louder. SO LOUD that the CDC may just start hearing it. The XMRV virus (and CFS/ME/FM) are not airbourne...you won't catch it from breathing the same air we do. However the XMRV virus can be spread through sexual contact, blood and breastfeeding.
So.....to all of us women with healthy husbands/partners and children, well shit. Thanks for letting us know about those risks, CDC (note the sarcasm). In Australia and Canada, patients with CFS/ME/FM are no longer allowed to donate blood. Why? Because of the XMRV risk of course. See, it's not only the patients taking it seriously, it's the people in charge of our country's fucking blood supply! Are you beginning to see how crooked the CDC are now yet or what?
The similarities between AIDS and CFS/ME/FM are scary. There's no other word for it. From immune dysfunction to similar infections to the cognitive difficulties. The CDC would and do deny this...they continue to either mock or ignore every single piece of research published stating that CFS/ME have any immunological involvement. They've been good at bullshitting since the 80's and they're still doing it now, only now with all the new evidence and louder public outcries, their bullshit is becoming more and more apparent. I'd like to say it's laughable but it's not.
These retroviruses cause cancer, infections, neurological diseases and of course, immune disorders. All three retroviruses are permanent. Just as our diseases are permanent.
The more evidence found about the link between XMRV and our disease, the more it's looking like the cause of the diseases we suffer. That is simply undeniable. The CDC need to wake up and do the right thing here. People are dying every single day, and I'm not just talking about the people who commit suicide because they can't bear their illness anymore. I'm also talking about the people who "suddenly" stop breathing, who "suddenly" suffer a major heart attack, who "suddenly" have a stroke. These deaths ARE due to the person's illness but they are never documented that way which does an indescribable amount of harm and misjustice to the victim's family. It's so fucking wrong on so many levels and this cover up by the CDC is the reason why.
Now...if you're going to call me paranoid, then call almost every CFS/ME/FM patient paranoid. Call our doctor's who can't do a damn thing about this paranoid too. Call the widows and families caring for their sick loved one paranoid too. Actually wait, if you're going to call me paranoid, you must work for the CDC. Centre For Disease Control? - Now that is laughable. The only thing you lying bastards control is covering your own asses.
These diseases can be fatal. These diseases ruin lives, marriages, families. These diseases are so misunderstood, under-reported and ignored by the media that our own families don't even know how seriously ill we are. The general public have no idea...until they get sick. If the XMRV retrovirus is the cause as to why we got sick (which research suggests it is), and if that were to be made known to the world - then we will be able to access better treatment. Better medicines. Better health care. A better outlook - a better understanding of why we're so damn ill. A much better mental state due to all of the above.
So my question to the CDC is this: Who the fuck are you to deny us that?
On that note, I'll leave it.
Em
xoxo
Tuesday, July 6, 2010
LDN & Fibromyalgia...what? how? if? when?
I recently watched a lecture given by Dr Sean Mackey from the Stanford University Medical Centre on Youtube. The lecture is called 'An Update On Fibromyalgia' and covered what Fibromyalgia is, it's possible causes and the treatments available for the condition. This post will focus on one treatment - LDN - Low Dose Naltrexone.
LDN is not a common treatment for Fibromyalgia. In Australia (where I live), LDN is almost unheard of. I will ask my specialist about it when I see him next, however I am prepared to be told it's not available here. While Naltrexone is a common drug here for people with alcohol and drug problems, it's not seen as a treatment for Fibro. LDN is an opiod blocker when given in doses of 50mg, which is the usual amount given to patients fighting addiction. Low Dose Naltrexone is 4.5mg, which is more than 10 times less than the 50mg dose given to patients fighting addiction.
Many, many people have found LDN to be a successful treatment. Not just for Fibromyalgia, but for M.E, CFS, Lupus and MS. Patients have reported their symptoms have either vanished, eased or improved significantly. A lot of patients given LDN have claimed to have gained their lives back. So why is LDN not a standard treatment for these conditions? - well, from what I've read and heard, the reason seems simple. The reason it's not a standard treatment is because the drug companies wouldn't profit. Naltrexone in low doses is very cheap, dirt cheap in fact, therefore if it was to become a "standard" treatment, the big medicine companies would lose out.
These findings are based on research carried out at the Stanford Univeristy Medical Centre : Using LDN has an impact on Glial cells. Microglial cells are immune sipport cells, they prop up our nervous system. These cells are heavily active during infection and when cells are damaged.
Microglial cells are usually in a resting state while passively searching for "problems" (or bugs).
When these cells are activated, microglial cells pull in their "branches" and become mobile. They then attack where the problem (infection/bug) is, which produces a number of factors in the brain and spinal cord that increases pain sensivity and feelings of being unwell.
In Fibromyalgia patients, it was found that these glial cells were not returning to their normal "resting" state. They continued to stay in a role so that illness continues. The cells were basically stuck in their "on" position...which is the reason why the pain and illness don't just stop or go away.
As I've said above, the usual dose of Naltrexone (50mg) stops Narcotics working. The usual dose of Naltrexone can have some mild side effects.
When used in low doses (4.5mg), Naltrexone blocks the Microglia (Glial cells) receptors without affecting the opiod receptors on neurons. Studies found that >50% reduction in pain for Fibro patients who used LDN. 7 out of 10 patients responded well and reported nil side effects. Within 7 days, their sleep significantly improved. When they ceased using LDN, they became sick again.
Compared to other treatments for Fibromyalgia, LDN seems to be not only the safest and the most promising, but it also seems to be the cheapest. Accupuncture has been found to improve symptoms in some Fibro patients, however it's very expensive. NSAID's have been found to generally have no effect whatsover but are still regulardly handed out to Fibro patients (I can honestly say they did nothing for me). Lyrica (or Pregabalin) has improved the lives of SOME patients, however the side effects can be an utter nightmare. Some Fibro patients have tried low level lasers however not enough research has been done about the effects. Hydrogen Peroxide has been a debated treatment for Fibro (among other conditions) but seems to carry dangerous risks and huge costs.
Guaifenson seems to be a popular treatment for Fibro. Guaifenson is the active ingredient in a lot of cough medicines and blocks the MNDA receptors. There is evidence that when used in low doses, it may work on Glial cells. The usual (large) dose of it can have significant side effects, mainly being sedation. Lower doses may have some, little or no side effects but there isn't enough research available to show any real numbers. In fact when it comes to this treatment in general, there just doesn't seem to be enough research to really say whether it will help patients with Fibromyalgia or not.
Obviously there are other treatments for Fibromyalgia. As well as our prescription medications, a lot of us take vitamins and supplements to try and improve our condition...we all take different things, we all do different things but we all have one thing in common, we're ALL trying to figure out what will work for us. Unfortunately, most of us keep hitting a brick wall. This isn't only disapointing for us, it's expensive!
Given the research done, given the fact that LDN has proven to be an extremely safe and generic drug, given the fact that it's cheap, given the fact that countless Fibro patients have said their lives have improved because of this drug...it is time it became available to us!! It is time we're at least given the chance to try this medication. Nobody is saying it's a cure...but it's worth a try in my opinion. I'm hoping my specialist will be able to shed some light on when...or if...LDN will become available in this country, I am looking forward to hearing his opinion about it.
To learn more about Low Dose Naltrexone for the treatment of FM/CFS/M.E and other conditions, simply type LDN into Google. To watch the video 'An Update On Fibromyalgia' or see more medical studies/reports from Dr Sean Mackey, please go to http://www.healthlibrary.stanford.edu .
Hope you're all having a peaceful day :)
Em
xoxoxo
LDN is not a common treatment for Fibromyalgia. In Australia (where I live), LDN is almost unheard of. I will ask my specialist about it when I see him next, however I am prepared to be told it's not available here. While Naltrexone is a common drug here for people with alcohol and drug problems, it's not seen as a treatment for Fibro. LDN is an opiod blocker when given in doses of 50mg, which is the usual amount given to patients fighting addiction. Low Dose Naltrexone is 4.5mg, which is more than 10 times less than the 50mg dose given to patients fighting addiction.
Many, many people have found LDN to be a successful treatment. Not just for Fibromyalgia, but for M.E, CFS, Lupus and MS. Patients have reported their symptoms have either vanished, eased or improved significantly. A lot of patients given LDN have claimed to have gained their lives back. So why is LDN not a standard treatment for these conditions? - well, from what I've read and heard, the reason seems simple. The reason it's not a standard treatment is because the drug companies wouldn't profit. Naltrexone in low doses is very cheap, dirt cheap in fact, therefore if it was to become a "standard" treatment, the big medicine companies would lose out.
These findings are based on research carried out at the Stanford Univeristy Medical Centre : Using LDN has an impact on Glial cells. Microglial cells are immune sipport cells, they prop up our nervous system. These cells are heavily active during infection and when cells are damaged.
Microglial cells are usually in a resting state while passively searching for "problems" (or bugs).
When these cells are activated, microglial cells pull in their "branches" and become mobile. They then attack where the problem (infection/bug) is, which produces a number of factors in the brain and spinal cord that increases pain sensivity and feelings of being unwell.
In Fibromyalgia patients, it was found that these glial cells were not returning to their normal "resting" state. They continued to stay in a role so that illness continues. The cells were basically stuck in their "on" position...which is the reason why the pain and illness don't just stop or go away.
As I've said above, the usual dose of Naltrexone (50mg) stops Narcotics working. The usual dose of Naltrexone can have some mild side effects.
When used in low doses (4.5mg), Naltrexone blocks the Microglia (Glial cells) receptors without affecting the opiod receptors on neurons. Studies found that >50% reduction in pain for Fibro patients who used LDN. 7 out of 10 patients responded well and reported nil side effects. Within 7 days, their sleep significantly improved. When they ceased using LDN, they became sick again.
Compared to other treatments for Fibromyalgia, LDN seems to be not only the safest and the most promising, but it also seems to be the cheapest. Accupuncture has been found to improve symptoms in some Fibro patients, however it's very expensive. NSAID's have been found to generally have no effect whatsover but are still regulardly handed out to Fibro patients (I can honestly say they did nothing for me). Lyrica (or Pregabalin) has improved the lives of SOME patients, however the side effects can be an utter nightmare. Some Fibro patients have tried low level lasers however not enough research has been done about the effects. Hydrogen Peroxide has been a debated treatment for Fibro (among other conditions) but seems to carry dangerous risks and huge costs.
Guaifenson seems to be a popular treatment for Fibro. Guaifenson is the active ingredient in a lot of cough medicines and blocks the MNDA receptors. There is evidence that when used in low doses, it may work on Glial cells. The usual (large) dose of it can have significant side effects, mainly being sedation. Lower doses may have some, little or no side effects but there isn't enough research available to show any real numbers. In fact when it comes to this treatment in general, there just doesn't seem to be enough research to really say whether it will help patients with Fibromyalgia or not.
Obviously there are other treatments for Fibromyalgia. As well as our prescription medications, a lot of us take vitamins and supplements to try and improve our condition...we all take different things, we all do different things but we all have one thing in common, we're ALL trying to figure out what will work for us. Unfortunately, most of us keep hitting a brick wall. This isn't only disapointing for us, it's expensive!
Given the research done, given the fact that LDN has proven to be an extremely safe and generic drug, given the fact that it's cheap, given the fact that countless Fibro patients have said their lives have improved because of this drug...it is time it became available to us!! It is time we're at least given the chance to try this medication. Nobody is saying it's a cure...but it's worth a try in my opinion. I'm hoping my specialist will be able to shed some light on when...or if...LDN will become available in this country, I am looking forward to hearing his opinion about it.
To learn more about Low Dose Naltrexone for the treatment of FM/CFS/M.E and other conditions, simply type LDN into Google. To watch the video 'An Update On Fibromyalgia' or see more medical studies/reports from Dr Sean Mackey, please go to http://www.healthlibrary.stanford.edu .
Hope you're all having a peaceful day :)
Em
xoxoxo
Saturday, July 3, 2010
My Disease is hard on YOU?! OK..here's how it is for me..
Chronic, unrelenting pain that radiates from one place to the next. Constant fatigue no matter how much or little sleep you get. Debilitating anxiety that won't or rarely lets up. Hyperventilating upon waking. Panic attacks. Tremors. Pins and needles. Breathing difficulties. Nightmares. Hearing problems. Vision problems. Eye twitching. Muscle weakness. Insomnia. Hair loss. Difficulty swallowing. Loss of appetite. Depression. Stomach cramps. Nausea and sometimes vomiting. Sore throat & sinus problems. Severe sensitivity to noise and light. Vertigo & dizziness. Memory loss.
That's how almost everyday is for me. By the time I've taken 12 of my 32 daily pills (and counting) in the morning, I'm ready for bed again.
No cure. No standard treatment. No awareness. No research when compared to other debilitating and incurable diseases. How the hell do you think that makes Fibro patients feel? We all do our very best. We do what we're capable of and most of all we try endlessly to hold on to HOPE. Hope that one day, we'll see a cure. Hope that this condition is NOT genetic so that our children never have to suffer the way we do.
I'm sorry if my disease is an inconvenience for you...oh wait no I'm not :) Believe me, it's harder on me then it is on you. This disease has stolen my life away from me at the age of 27, four months after giving birth to my baby boy. I'm sorry if it seems like I don't care about your problems right now...I do care, I'm just busy fighting my own battles and coming to grips with my new "life".
If I can't make a function, if I can't "do coffee", if I can't have visitors over, if I can't take your phone call, if it takes me a while to respond to a text or email, if I cancel at the last minute, if I say "no" to seeing you for what seems like the 100th time...please know that it has ABSOLUTELY NOTHING TO DO WITH YOU.
It's not me saying "no". It's the pain....or anxiety....or fatigue....or my complete lack of ability to put a sentence together that's saying "no". I don't want to be alone, but sometimes it's necessary.
You miss the old me? Well guess what, I miss her more. I lost her and I'd do anything to get her back.
This is how it is. I simply can't deal, nor will I deal with any pressure - any emotional blackmail or manipulation or any guilt trips from ANYBODY. If I'm not up to doing something, whether it's been planned or not - then it isn't going to happen. If you understood this disease, then you'd understand THAT.
Stress makes Fibromyalgia worse, so this is a warning: If you stress me out because you're too ignorant or too selfish to realise just how seriously ill I am, then feel free to get the hell out of my life.
I'm living on an hour to hour basis right now. Taking one hour at a time. I could be fine this morning, but a cripple by lunchtime. I could come good again in the afternoon, but then barely able to see/hear/do anything by that night.
You're fighting your own battles, I realise that and I do care. But I'm fighting a wheelchair. I'm fighting going to hospital for a very long time. I'm fighting the fact that no treatments, medications or therapy seems to be helping.
I'm fighting for me. I'm fighting for my little boy. I'm fighting for my husband. It takes ALL my energy to give these men the best of me, they deserve the best of me, they NEED the best of me and they get it. This leaves me little or no energy for anybody else though and that's why I pace myself.
Pacing myself means: (example) Seeing a friend on Monday. Tuesday and Wednesday will be spent recovering. I may be up to seeing another friend on Thursday or Friday, but probably not. The next week I'll see another friend on a week day, then spend the next day recovering. Weekends are spent getting as much rest as I can (husband is home weekends) so I can face the week ahead. If I'm up to it, I will see my family every 2nd or 3rd Sunday due to the fact that they're only 10 minutes down the road.
Grocery shopping requires assistance and means needing rest afterward.
Visiting anyone means needing to lie down as soon as I get home and at least 2 days recovery.
Being in the car for longer than 15 minutes requires strong pain relief and muscle relaxants.
Standing for more than 10 minutes can't, and won't happen.
Parties are no longer a possibility due to sensory overload (as are crowded or noisy places).
Any visitors who come over need to realise they can't be here too long (my besties understand this♥).
For now, going out alone just simply isn't a possibility.
For now, long conversations aren't a possibility.
I'm scared. I'm sad. I miss Emily - I'm still in the process of grieving her loss. Yes, I'm still "me" - but in my mind I'm a young 27, carefree, happy and strong, independent woman. In reality, I'm not. I'm reliant on my husband and my doctors. I'm a 27 year old living in an 80 year old's body. Trapped. This bereavement is very real and I've been told by medical professionals that it may take years before I'm "through" the grieving process.
I smile though...and by God do I laugh. My son lights up every single day, even the bad ones. My husband mends my broken heart and is the reason I'm not a complete cold shadow of my former self. These two boys keep me sane, they keep me going. They're my reason to live. They are my light.
If you've read this - as in really read it and not skimmed over it - then maybe you "get it" now. Maybe the next time I can't make some damn commitment, you'll have some compassion instead of contempt.
To all my Fibro Friends - wherever you are - Thank you for giving me the courage to stand up for myself. Thank you for inspiring me to ALLOW myself to feel the way I feel. I love you all.
Em
xoxoxo
That's how almost everyday is for me. By the time I've taken 12 of my 32 daily pills (and counting) in the morning, I'm ready for bed again.
No cure. No standard treatment. No awareness. No research when compared to other debilitating and incurable diseases. How the hell do you think that makes Fibro patients feel? We all do our very best. We do what we're capable of and most of all we try endlessly to hold on to HOPE. Hope that one day, we'll see a cure. Hope that this condition is NOT genetic so that our children never have to suffer the way we do.
I'm sorry if my disease is an inconvenience for you...oh wait no I'm not :) Believe me, it's harder on me then it is on you. This disease has stolen my life away from me at the age of 27, four months after giving birth to my baby boy. I'm sorry if it seems like I don't care about your problems right now...I do care, I'm just busy fighting my own battles and coming to grips with my new "life".
If I can't make a function, if I can't "do coffee", if I can't have visitors over, if I can't take your phone call, if it takes me a while to respond to a text or email, if I cancel at the last minute, if I say "no" to seeing you for what seems like the 100th time...please know that it has ABSOLUTELY NOTHING TO DO WITH YOU.
It's not me saying "no". It's the pain....or anxiety....or fatigue....or my complete lack of ability to put a sentence together that's saying "no". I don't want to be alone, but sometimes it's necessary.
You miss the old me? Well guess what, I miss her more. I lost her and I'd do anything to get her back.
This is how it is. I simply can't deal, nor will I deal with any pressure - any emotional blackmail or manipulation or any guilt trips from ANYBODY. If I'm not up to doing something, whether it's been planned or not - then it isn't going to happen. If you understood this disease, then you'd understand THAT.
Stress makes Fibromyalgia worse, so this is a warning: If you stress me out because you're too ignorant or too selfish to realise just how seriously ill I am, then feel free to get the hell out of my life.
I'm living on an hour to hour basis right now. Taking one hour at a time. I could be fine this morning, but a cripple by lunchtime. I could come good again in the afternoon, but then barely able to see/hear/do anything by that night.
You're fighting your own battles, I realise that and I do care. But I'm fighting a wheelchair. I'm fighting going to hospital for a very long time. I'm fighting the fact that no treatments, medications or therapy seems to be helping.
I'm fighting for me. I'm fighting for my little boy. I'm fighting for my husband. It takes ALL my energy to give these men the best of me, they deserve the best of me, they NEED the best of me and they get it. This leaves me little or no energy for anybody else though and that's why I pace myself.
Pacing myself means: (example) Seeing a friend on Monday. Tuesday and Wednesday will be spent recovering. I may be up to seeing another friend on Thursday or Friday, but probably not. The next week I'll see another friend on a week day, then spend the next day recovering. Weekends are spent getting as much rest as I can (husband is home weekends) so I can face the week ahead. If I'm up to it, I will see my family every 2nd or 3rd Sunday due to the fact that they're only 10 minutes down the road.
Grocery shopping requires assistance and means needing rest afterward.
Visiting anyone means needing to lie down as soon as I get home and at least 2 days recovery.
Being in the car for longer than 15 minutes requires strong pain relief and muscle relaxants.
Standing for more than 10 minutes can't, and won't happen.
Parties are no longer a possibility due to sensory overload (as are crowded or noisy places).
Any visitors who come over need to realise they can't be here too long (my besties understand this♥).
For now, going out alone just simply isn't a possibility.
For now, long conversations aren't a possibility.
I'm scared. I'm sad. I miss Emily - I'm still in the process of grieving her loss. Yes, I'm still "me" - but in my mind I'm a young 27, carefree, happy and strong, independent woman. In reality, I'm not. I'm reliant on my husband and my doctors. I'm a 27 year old living in an 80 year old's body. Trapped. This bereavement is very real and I've been told by medical professionals that it may take years before I'm "through" the grieving process.
I smile though...and by God do I laugh. My son lights up every single day, even the bad ones. My husband mends my broken heart and is the reason I'm not a complete cold shadow of my former self. These two boys keep me sane, they keep me going. They're my reason to live. They are my light.
If you've read this - as in really read it and not skimmed over it - then maybe you "get it" now. Maybe the next time I can't make some damn commitment, you'll have some compassion instead of contempt.
To all my Fibro Friends - wherever you are - Thank you for giving me the courage to stand up for myself. Thank you for inspiring me to ALLOW myself to feel the way I feel. I love you all.
Em
xoxoxo
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