Chronic Fatigue Syndrome: It's Not simply about being tired. It is a life-altering neurological condition that too many are suffering from.
One day while watching TED talks on YouTube I came across Jennifer. Brea’s video. And from the moment she starting speaking I thought, “oh my God, this is exactly what we’re dealing with trying to get people to pay attention to Steph’s cluster headaches.” And as I began to watch and listen to her story further I was soon in tears. The amount of absolute hell CFS/M.E. puts a person affected by the condition and their loved ones through is absolutely heartbreaking to hear.
And here it is 2018, and we’re fighting for those dealing with chronic invisible illnesses to be taken seriously and to investigate, and fund countless of medical conditions that affect thousands upon thousands-even billions of people every day. Chronic Fatigue Syndrome AKA, ( Myalgic Encephalomyelitis.) Is so much more than just being tired. It is a battle that is being fought by 250,000 people in the UK, and about 17-24 million people worldwide.
The first outbreak of CFS/M.E. was in the 1980's. And the questions the medical field had then still unanswered. What will it take for the medical field to take invisible illnesses and disabilities seriously enough to say, "we should make it our duty to investigate this more." If all these focus groups and polls we do on pointless and insignificant things every day, why don't we as a society, Use that time and energy to invest in things like our medical status and care in the world, and work toward finding answers to questions that are necessary for the for the thousands-millions that are silently dealing with living, dealing with, and fighting an invisible monster every single day Just so they can see the sunrise on a new day.
I applaud Jenniffer Brea, for her determination, fight, braveness, and boldness in giving a voice to something that needs to be heard, and heard loudly. From one fighter for the silent to another, I thank you.
Founder/Writer Of The Abler Blog,
Jessica
Author's Note: I am Not a medical professional of any kind. Please consult with a trusted medical professional for any and all medical needs.
Resources used for this post:
And here it is 2018, and we’re fighting for those dealing with chronic invisible illnesses to be taken seriously and to investigate, and fund countless of medical conditions that affect thousands upon thousands-even billions of people every day. Chronic Fatigue Syndrome AKA, ( Myalgic Encephalomyelitis.) Is so much more than just being tired. It is a battle that is being fought by 250,000 people in the UK, and about 17-24 million people worldwide.
The first outbreak of CFS/M.E. was in the 1980's. And the questions the medical field had then still unanswered. What will it take for the medical field to take invisible illnesses and disabilities seriously enough to say, "we should make it our duty to investigate this more." If all these focus groups and polls we do on pointless and insignificant things every day, why don't we as a society, Use that time and energy to invest in things like our medical status and care in the world, and work toward finding answers to questions that are necessary for the for the thousands-millions that are silently dealing with living, dealing with, and fighting an invisible monster every single day Just so they can see the sunrise on a new day.
I applaud Jenniffer Brea, for her determination, fight, braveness, and boldness in giving a voice to something that needs to be heard, and heard loudly. From one fighter for the silent to another, I thank you.
Founder/Writer Of The Abler Blog,
Jessica
Author's Note: I am Not a medical professional of any kind. Please consult with a trusted medical professional for any and all medical needs.
Resources used for this post:
: CDC.gov
google.com/ M.E. search
Unrest Documentary, (Netflix) written, directed, produced by Jennifer Brea (acute CFS/M.E. Fighter
Jennifer Brea TED Talk https://www.youtube.com/watch?v=Fb3yp4uJhq0&t=167s
Chronic Fatigue Syndrome, ME (Myalgic Encephalomyelitis)
Long-term, chronic is a fluctuating, neurological condition.
Causing many symptoms, effects many boy systems. Most common, the nervous and immune system. In The UK, an estimated 250,000 people have ME, around 17 million-24 worldwide have M.E.
Those who fight ME daily experience severe, persistent fatigue.
Experience post-exertional malaise(payback)(PEM)-The body has the inability to recover after only using small amounts of energy. This leads to a flare-up of symptoms. Flares up in symptoms can take a few days to kick in.
Not everyone with M.E. experiences the same symptoms nor do they experience the same level of severity in their symptoms. They can also experience different patterns of M.E. The symptoms and how severe they are can fluctuate and change over time. Severe and persistent fatigue is the most common symptoms of M.E. This feels extremely different than your typical tired feeling.
If you experience any new symptoms, it is extremely important to see your doctor. For it’s possible these symptoms may not be related to M.E.
There are three different levels of severity with M.E. Moderate, Mild, and severe. The following describes the difference between each level.
Mild M.E.
Are mobile can do light tasks, can work/go to school, and can live independently. But avoid social activities, and usually to take the weekend to recover for the work week ahead as well take days off.
Moderate M.E. Reduced mobility and restricted activity. Can have ups and downs in the severity of their symptoms and activities, but usually, have to stop school and working altogether. Needing rest periods, resting a couple of hrs in the afternoon. Sleeping at night is generally disturbed and of poor quality.
Severe M.E. People with Severe M.E. are unable to do any activity for themselves, Can only do minimal activities like brushing their teeth or washing their face. Severe cognitive difficulties, and rely on a
wheelchair for mobility. Unable to leave the house/ and or bed. And if they do they usually experience a pro-long flare-up in symptoms. They are also extremely sensitive to light and sound.
People with M.E. can experience financial difficulties, judgments/disbelief by family, friends, and family.
In February 2015, The Institute Of Medicine recommended that the title of CFS/M.E. to Systematic Exertion intolerance Disease (SEID) This has not been adopted yet.
https://www.cdc.gov/me-cfs/index.html
According to The Institute Of Medicine,
(2015) 836,000- to 2.5 million deal with CFS?M.E. But most have not been diagnosed.
Overexertion in doing activities. (PEM) post-external malaise
Thinking/concentration. Dizziness. People with CFS/M.E. Don’t have to “look” sick to have the condition. Anyone can get CFS/M.E.
CFS/M.E Costs the US economy an estimated 17-24 billion annually in medical bills and in lost incomes.
90% of people are undiagnosed.reasons for an un-diagnosis
: limited access to healthcare
: Lack of education about CFS/M.E. among the various healthcare providers.
: Anyone can get CFS/ M.E.: Most common in ages between 40-60 years of age. : Woman are more like to experience CFS/M.E. Than men. : This condition affects children, teens, and adults of all ages. : White people are the most diagnosed among all other ethnic backgrounds.
At least 1 and 4 M.E. Patients are homebound/bedridden.
Most Medical Schools in the United States don’t have CFS/M.E. as [art as their training.
No known cause for CFS/M.E. so because of that in-depth evaluation of symptoms, and knowing a person’s history well. It also important to look at other conditions with similar symptoms. Because while there is no known cause for CFS/M.E. Some symptoms can be managed and treated.
Because there is known test to confirm CFS/M.E. It makes diagnosing difficult. As well experiencing symptoms that are similar to other illnesses.
: Though exam
: Ask many questions, including health history, current illness.
: including symptoms, and how often they occur
: How bad they are/ how long they last
: How the symptoms affect the person’s lives
Primary symptoms (core symptoms) occur in most CFS/M.E. patients. The 3 primary symptoms required for a diagnosis are
: Activity level drops. Along with fatigue that lasts longer than 6 months.
: Worsening of symptoms after Physical or mental activities. (Known as PEM. )Also known by someone with CFS/M.E. as “crash”, ‘relapse,” and “collapse.” The time of recovery varies. Which is why it’s hard to predict what will trigger someone with CFS/M.E. To crash.
: Sleep problems. Falling asleep/ or staying asleep.
In addition to the core symptoms, one of the two following symptoms for a diagnosis of CFS/M.E.
: problems with thinking/Memory. Most People with CFS/M.E. Have issues with thinking quickly, remember things, and paying attention to details. Brain fog or ’stuck in a fog” unable to think clearly.
Worsening of symptoms why sitting upright or standing. (orthostatic intolerance) may experience lightheadedness, weakness, dizziness/faint. While sitting upright or standing. May experience vision problems like blurring or seeing spots.
Notes from the documentary Unrest. Written, produced, and directed by Jennifer Brea an acute CFS/M.E. Fighter.
CFS/ First broke out in the 1980’s
NIH National Institute Of Health= CFS is the lowest funded.
CFS is linked to viruses/bacterial infections.
CFS/M.E Is a spectrum disorder like MS is. But CFS/M.E. is as twice as common as MS.
A quarter are home-bound
About 85% are women
About 80% of woman have autoimmune diseases
Back then and still today a woman is diagnosed with conversion disorder or hysteria.(Mrs. Brea was originally diagnosed with conversion disorder.)
While there is no evidence of it running in families, unrest does show a mother and daughter with the disorder. We just don’t know if its heredity or not.
Places like Denmark believe That CFS/M.E. is not a physical condition, but rather a physiological one.
Mitochondria Cell > (Google.com) Anaerobic respiration is when the body produces energy for exercise without oxygen. ... It is also used for fast, powerful bursts of energy, for which the aerobic system is insufficient. There are two systems within Anaerobic metabolism, which are the ATP-PC system and the lactic acid system.
Aerobic energy > what the cell make 2-3 min window of energy (Clinical Immunology) >the study of the immune system
The highest death rate for CFS/M.E. is by suicide.
Millions Missing March Worldwide marches for CFS/M.E.
Continued from https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
Most (but not all CFS/M.E. Fighters may also experience these additional symptoms.
: Pain is a common symptom, but where, what type, And or how often varies. The type of pain people with CFS/M.E. experience is not typical pain caused by an injury.
: Muscle pain and aches
: Joint pain without swelling or redness
: Headaches (new or worsening)
Other possible symptoms are
: Tender lymph nodes in the neck or armpits
: a sore throat (happens often)
: Digestive issues IE IBS
: chills/night sweats
: Allergies/sensitivity to foods/orders, chemicals/ noise
Author’s note: THE CDC.Gov is not a substitute for getting a proper medical diagnosis. This information is simply to advise and guide someone into getting a proper medical diagnosis.
How to Diagnose CFS/M.E. Doctor/Healthcare Provider
: As about the person(s) medical history/family history
: Thorough Physical exam and mental status exam
: Order blood/urine and other tests
The following are examples of the types of questions your healthcare provider may ask the person.
: What are you able to do now? How does it compare to what you were able to do before?
: How long have you felt this way?
: Do you feel better after sleeping/resting?
: What makes you feel worse?
: What helps you feel better?
: What happens when you try and push yourself to do activities that are now hard for you to do?
: Are you able to think as clearly as you did before getting sick?
: What symptoms keep you from doing what you want or need to do?
Some CFS/M.E. Fighters may feel may feel it necessary and or beneficial if they keep an activity journal to help them remember important deals during their health care visit.
Doctors may also send the person via referral to the following specialists. To either add or check off whether they have another condition with similar symptoms. It is possible a person could still have CFS/M.E. And it is possible if there is evidence of another condition with their CFS/M.E. Diagnosis, That the other condition could be easily treated and the person with CFS/M.E. may start feeling better The following are some examples of specialists the person may be referred to are: Neurologist, Rheumatologist, and a sleep specialist.
Treatment:
There is currently no cure or approved treatment for CFS/M.E.
Some symptoms can be treated/managed. This may provide some relief to CFS/M.E. Fighters but not others. Learning other strategies to help cope and live with the illness can also be useful. For example, Learning how to manage your activities could be helpful.
There needs to be a unified front between CFS/M.E. Fighters. Their families, and most importantly their healthcare providers. If this happens more often and they work together to find which symptoms cause the most problems-Treated First.
Discuss treatment plans/ Most beneficial/ most harmful, Including medications. And any other therapies.
It is absolutely vital that Healthcare providers and families of CFS/M.E Fighters understand that this hard on the person with CFS/M.E.
The following is just a basic list of some of the symptoms that healthcare providers may try to treat. You can read a more detailed list on the cdc.gov website.
Sleep problems
Pain
Depression/Stress / Anxiety
Dizziness/lightheaded (Orthostatic intolerance.)
Memory/Concentration problems
Please be aware that you show always discuss with your doctor about potential therapies because they can be promoted as a “cure” for CFS/M.E. which can not only be costly but also extremely dangerous. And they are not proven to be any kind of “cure” for this condition.
The following are other possible treatments/strategies that could help the person. (For those not bedridden by CFS/M.E.)
_Avoiding “push-and-crash” cycles. Carefully manage your activities.- Push and-crash cycles are when a person with CFS/M.E. Is having a good day, and tries to push themselves physically to complete activities That would normally be too much for them. (Do too much, Crash, rest, (start to feel better), do too much again. Crash again, These time symptoms worsen. Adapting daily activities, like sitting when doing your laundry, taking frequent breaks, and dividing bigger projects into smaller, micro-managing tasks can help.
_Talking to a therapist will help you cope, with daily life.
They may be able to help you find strategies for handling the condition.
The following are other possible strategies. And support-therapies A person with CFS/M.E. Could also try. (This is the basic list. To see the more detailed list please visit CDC.org )
_A Balanced Diet
_ Nutritional supplements.
_ Follow-up tests
_ complementary therapy, I.E. acupuncture, meditation
Etc. Please discuss all treatments with your doctor. For the simple fact that these treatments are promised as “cures.” That is not only not proven to be true but is also extremely costly and dangerous.
Children and teens with CFS/M.E.
_Not much can be told as to why children are also showing that they too have the condition. (Too few studies have not been done involving children in their age group.)
_ Scientists estimate that 2 in 100 children have CFS/M.E.
-CFS/M.E. is more common then teens than younger children.
Most of the symptoms are the same for teens and young adults as they are for the adult age group with CFS/M.E.
For more details and info please go to DCD.org There you can also find resources and other information that may help you or someone you love.
Long-term, chronic is a fluctuating, neurological condition.
Causing many symptoms, effects many boy systems. Most common, the nervous and immune system. In The UK, an estimated 250,000 people have ME, around 17 million-24 worldwide have M.E.
Those who fight ME daily experience severe, persistent fatigue.
Experience post-exertional malaise(payback)(PEM)-The body has the inability to recover after only using small amounts of energy. This leads to a flare-up of symptoms. Flares up in symptoms can take a few days to kick in.
Not everyone with M.E. experiences the same symptoms nor do they experience the same level of severity in their symptoms. They can also experience different patterns of M.E. The symptoms and how severe they are can fluctuate and change over time. Severe and persistent fatigue is the most common symptoms of M.E. This feels extremely different than your typical tired feeling.
If you experience any new symptoms, it is extremely important to see your doctor. For it’s possible these symptoms may not be related to M.E.
There are three different levels of severity with M.E. Moderate, Mild, and severe. The following describes the difference between each level.
Mild M.E.
Are mobile can do light tasks, can work/go to school, and can live independently. But avoid social activities, and usually to take the weekend to recover for the work week ahead as well take days off.
Moderate M.E. Reduced mobility and restricted activity. Can have ups and downs in the severity of their symptoms and activities, but usually, have to stop school and working altogether. Needing rest periods, resting a couple of hrs in the afternoon. Sleeping at night is generally disturbed and of poor quality.
Severe M.E. People with Severe M.E. are unable to do any activity for themselves, Can only do minimal activities like brushing their teeth or washing their face. Severe cognitive difficulties, and rely on a
wheelchair for mobility. Unable to leave the house/ and or bed. And if they do they usually experience a pro-long flare-up in symptoms. They are also extremely sensitive to light and sound.
People with M.E. can experience financial difficulties, judgments/disbelief by family, friends, and family.
In February 2015, The Institute Of Medicine recommended that the title of CFS/M.E. to Systematic Exertion intolerance Disease (SEID) This has not been adopted yet.
https://www.cdc.gov/me-cfs/index.html
According to The Institute Of Medicine,
(2015) 836,000- to 2.5 million deal with CFS?M.E. But most have not been diagnosed.
Overexertion in doing activities. (PEM) post-external malaise
Thinking/concentration. Dizziness. People with CFS/M.E. Don’t have to “look” sick to have the condition. Anyone can get CFS/M.E.
CFS/M.E Costs the US economy an estimated 17-24 billion annually in medical bills and in lost incomes.
90% of people are undiagnosed.reasons for an un-diagnosis
: limited access to healthcare
: Lack of education about CFS/M.E. among the various healthcare providers.
: Anyone can get CFS/ M.E.: Most common in ages between 40-60 years of age. : Woman are more like to experience CFS/M.E. Than men. : This condition affects children, teens, and adults of all ages. : White people are the most diagnosed among all other ethnic backgrounds.
At least 1 and 4 M.E. Patients are homebound/bedridden.
Most Medical Schools in the United States don’t have CFS/M.E. as [art as their training.
No known cause for CFS/M.E. so because of that in-depth evaluation of symptoms, and knowing a person’s history well. It also important to look at other conditions with similar symptoms. Because while there is no known cause for CFS/M.E. Some symptoms can be managed and treated.
Because there is known test to confirm CFS/M.E. It makes diagnosing difficult. As well experiencing symptoms that are similar to other illnesses.
: Though exam
: Ask many questions, including health history, current illness.
: including symptoms, and how often they occur
: How bad they are/ how long they last
: How the symptoms affect the person’s lives
Primary symptoms (core symptoms) occur in most CFS/M.E. patients. The 3 primary symptoms required for a diagnosis are
: Activity level drops. Along with fatigue that lasts longer than 6 months.
: Worsening of symptoms after Physical or mental activities. (Known as PEM. )Also known by someone with CFS/M.E. as “crash”, ‘relapse,” and “collapse.” The time of recovery varies. Which is why it’s hard to predict what will trigger someone with CFS/M.E. To crash.
: Sleep problems. Falling asleep/ or staying asleep.
In addition to the core symptoms, one of the two following symptoms for a diagnosis of CFS/M.E.
: problems with thinking/Memory. Most People with CFS/M.E. Have issues with thinking quickly, remember things, and paying attention to details. Brain fog or ’stuck in a fog” unable to think clearly.
Worsening of symptoms why sitting upright or standing. (orthostatic intolerance) may experience lightheadedness, weakness, dizziness/faint. While sitting upright or standing. May experience vision problems like blurring or seeing spots.
Notes from the documentary Unrest. Written, produced, and directed by Jennifer Brea an acute CFS/M.E. Fighter.
CFS/ First broke out in the 1980’s
NIH National Institute Of Health= CFS is the lowest funded.
CFS is linked to viruses/bacterial infections.
CFS/M.E Is a spectrum disorder like MS is. But CFS/M.E. is as twice as common as MS.
A quarter are home-bound
About 85% are women
About 80% of woman have autoimmune diseases
Back then and still today a woman is diagnosed with conversion disorder or hysteria.(Mrs. Brea was originally diagnosed with conversion disorder.)
While there is no evidence of it running in families, unrest does show a mother and daughter with the disorder. We just don’t know if its heredity or not.
Places like Denmark believe That CFS/M.E. is not a physical condition, but rather a physiological one.
Mitochondria Cell > (Google.com) Anaerobic respiration is when the body produces energy for exercise without oxygen. ... It is also used for fast, powerful bursts of energy, for which the aerobic system is insufficient. There are two systems within Anaerobic metabolism, which are the ATP-PC system and the lactic acid system.
Aerobic energy > what the cell make 2-3 min window of energy (Clinical Immunology) >the study of the immune system
The highest death rate for CFS/M.E. is by suicide.
Millions Missing March Worldwide marches for CFS/M.E.
Continued from https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
Most (but not all CFS/M.E. Fighters may also experience these additional symptoms.
: Pain is a common symptom, but where, what type, And or how often varies. The type of pain people with CFS/M.E. experience is not typical pain caused by an injury.
: Muscle pain and aches
: Joint pain without swelling or redness
: Headaches (new or worsening)
Other possible symptoms are
: Tender lymph nodes in the neck or armpits
: a sore throat (happens often)
: Digestive issues IE IBS
: chills/night sweats
: Allergies/sensitivity to foods/orders, chemicals/ noise
Author’s note: THE CDC.Gov is not a substitute for getting a proper medical diagnosis. This information is simply to advise and guide someone into getting a proper medical diagnosis.
How to Diagnose CFS/M.E. Doctor/Healthcare Provider
: As about the person(s) medical history/family history
: Thorough Physical exam and mental status exam
: Order blood/urine and other tests
The following are examples of the types of questions your healthcare provider may ask the person.
: What are you able to do now? How does it compare to what you were able to do before?
: How long have you felt this way?
: Do you feel better after sleeping/resting?
: What makes you feel worse?
: What helps you feel better?
: What happens when you try and push yourself to do activities that are now hard for you to do?
: Are you able to think as clearly as you did before getting sick?
: What symptoms keep you from doing what you want or need to do?
Some CFS/M.E. Fighters may feel may feel it necessary and or beneficial if they keep an activity journal to help them remember important deals during their health care visit.
Doctors may also send the person via referral to the following specialists. To either add or check off whether they have another condition with similar symptoms. It is possible a person could still have CFS/M.E. And it is possible if there is evidence of another condition with their CFS/M.E. Diagnosis, That the other condition could be easily treated and the person with CFS/M.E. may start feeling better The following are some examples of specialists the person may be referred to are: Neurologist, Rheumatologist, and a sleep specialist.
Treatment:
There is currently no cure or approved treatment for CFS/M.E.
Some symptoms can be treated/managed. This may provide some relief to CFS/M.E. Fighters but not others. Learning other strategies to help cope and live with the illness can also be useful. For example, Learning how to manage your activities could be helpful.
There needs to be a unified front between CFS/M.E. Fighters. Their families, and most importantly their healthcare providers. If this happens more often and they work together to find which symptoms cause the most problems-Treated First.
Discuss treatment plans/ Most beneficial/ most harmful, Including medications. And any other therapies.
It is absolutely vital that Healthcare providers and families of CFS/M.E Fighters understand that this hard on the person with CFS/M.E.
The following is just a basic list of some of the symptoms that healthcare providers may try to treat. You can read a more detailed list on the cdc.gov website.
Sleep problems
Pain
Depression/Stress / Anxiety
Dizziness/lightheaded (Orthostatic intolerance.)
Memory/Concentration problems
Please be aware that you show always discuss with your doctor about potential therapies because they can be promoted as a “cure” for CFS/M.E. which can not only be costly but also extremely dangerous. And they are not proven to be any kind of “cure” for this condition.
The following are other possible treatments/strategies that could help the person. (For those not bedridden by CFS/M.E.)
_Avoiding “push-and-crash” cycles. Carefully manage your activities.- Push and-crash cycles are when a person with CFS/M.E. Is having a good day, and tries to push themselves physically to complete activities That would normally be too much for them. (Do too much, Crash, rest, (start to feel better), do too much again. Crash again, These time symptoms worsen. Adapting daily activities, like sitting when doing your laundry, taking frequent breaks, and dividing bigger projects into smaller, micro-managing tasks can help.
_Talking to a therapist will help you cope, with daily life.
They may be able to help you find strategies for handling the condition.
The following are other possible strategies. And support-therapies A person with CFS/M.E. Could also try. (This is the basic list. To see the more detailed list please visit CDC.org )
_A Balanced Diet
_ Nutritional supplements.
_ Follow-up tests
_ complementary therapy, I.E. acupuncture, meditation
Etc. Please discuss all treatments with your doctor. For the simple fact that these treatments are promised as “cures.” That is not only not proven to be true but is also extremely costly and dangerous.
Children and teens with CFS/M.E.
_Not much can be told as to why children are also showing that they too have the condition. (Too few studies have not been done involving children in their age group.)
_ Scientists estimate that 2 in 100 children have CFS/M.E.
-CFS/M.E. is more common then teens than younger children.
Most of the symptoms are the same for teens and young adults as they are for the adult age group with CFS/M.E.
For more details and info please go to DCD.org There you can also find resources and other information that may help you or someone you love.
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