Prognosis For Myalgic Encephalomyelitis And Chronic Fatigue Syndrome
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Prognosis refers to the expected course of a disease and the prospect of recovery. The prognosis for myalgic encephalomyelitis and chronic fatigue syndrome is considered to be poor with only a small minority returning to pre-morbid levels of functioning. The majority of patients remains significantly impaired. A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults.
Due to heterogeneity in methodology, such as case definition, length of follow-up and assessment of recovery, the estimated prognosis of ME/CFS is variable and uncertain. According to ME expert Charles Shepherd, there is a wide spectrum of severity, variability and degrees of improvement and deterioration in ME/CFS and so prognosis can very difficult to predict with any certainty in an individual case.”
Recovered But With Lingering Symptoms
Some of the young adults rated their health as good, while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties.
Almost all our patients reported symptom fluctuation, including daily, weekly or monthly periods. This, together with our other findings, suggests that symptoms often improve or worsen without altering the overall severity of the illness.
Chronic Fatigue Risk Factors
Chronic fatigue syndrome is most prevalent among adults between the ages of 40 and 60 years old, but it can affect people of all ages, including children. Females are 2 to 4 times more likely than males to develop the illness. Some people may be genetically predisposed to CFS. Although the disease is diagnosed in Caucasians more than in any other racial group, it is estimated that 90% of people living with chronic fatigue syndrome are not diagnosed. Here are other factors that may increase the risk of developing ME/CFS:
- Environmental pollutants
- Certain medications
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What Can The Nhs Do For You
At this point I was discharged from the system, and I think they made the right decision. The NHS guidelines on how to treat ME/CFS are:
- Cognitive Behavioural Therapy
- a structured exercise programme called Graded Exercise Therapy
- medication to control pain, nausea and sleeping problems.
On the other hand, the volume of clinical research that has established evidence for physical changes to patients with ME/CFS is growing all the time just google “ME/CFS research 2017” if you’re interested.
Long Term Follow Up Of Young People With Chronic Fatigue Syndrome Attending A Pediatric Outpatient Service
- Department of General Medicine, Royal Children’s Hospital, Melbourne, VIC, Australia
Aim: To determine the reported duration of illness, the functional and educational long-term outcomes, predictive factors for recovery and seek feedback regarding management in pediatric/adolescent myalgic encepahalomyelitis/chronic fatigue syndrome .
Methods: A cohort observational study of 784 young people, mean age 14.6 years, with ME/CFS diagnosed at a specialist pediatric hospital and receiving regular care, was conducted with follow-up for a mean 8 years after onset. Baseline symptoms, history, depression and anxiety questionnaires were available from 418. The remaining 366, did not have similar standardized baseline information. Questionnaires requested functional rating, persistent symptoms, duration of illness if recovered, social engagement and school/work attendance. Feedback was sought regarding management, support services, useful information, helpful interventions or personnel and use of alternative therapies. Reported recovery and function were compared with baseline information and between the two groups.
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The Cdc’s Optimistic Prognosis
Despite heterogeneity in diagnostic criteria and patient sample, most research is in agreement on the poor prognosis in ME/CFS . Research by the Centers for Disease Control and Prevention however has controversially reported much higher recovery rates. In 1999, for example, the CDC surveillance system reported a cumulative probability of recovery from ME/CFS of 31.4% during the first 5 years of illness and 48.1% during the first 10 years of illness. Data published in 2003 from the epidemiological research in Wichita, Kansas indicated even higher recovery rates. At the three year follow-up almost 80% no longer fulfilled the diagnostic criteria for ME/CFS, though a large minority were diagnosed with other diseases such as sleep disorders. More than half of the studied ME/CFS patients had experienced partial to total remission during follow-up.
However, it should be noted that ME/CFS recovery definitions are inherently based on opinions rather than scientific measures, and influenced by factors like the diagnostic criteria used, etiological perceptions of ME/CFS, age and lifestyle status of patients, and misdiagnosis.
While presenting a more positive outlook may decrease physician discomfort in dealing with a chronic and debilitating disease like ME, it is disingenuous to imply that patients will return to good health when so few do. Moreover, this can delay patients from getting the social support they need to cope with a lifelong illness.
How Is Cfs Diagnosed
CFS is a very challenging condition to diagnose.
According to the Institute of Medicine, as of 2015, CFS occurs in about 836,000 to 2.5 million Americans. Its estimated, however, that 84 to 91 percent have yet to receive a diagnosis.
There are no medical tests to screen for CFS. Its symptoms are similar to many other conditions. Many people with CFS dont look sick, so doctors may not recognize that they indeed have a health condition.
In order to receive a CFS diagnosis, your doctor will rule out other potential causes and review your medical history with you.
Theyll confirm that you at least have the core symptoms previously mentioned. Theyll also ask about the duration and severity of your unexplained fatigue.
Ruling out other potential causes of your fatigue is a key part of the diagnosis process. Some conditions with symptoms that resemble those of CFS include:
- severe obesity
- sleep disorders
The side effects of certain drugs, such as antihistamines and alcohol, can mimic symptoms of CFS as well.
Because of the similarities between symptoms of CFS and many other conditions, its important to not self-diagnose. Talk to your doctor about your symptoms. They can work with you to get relief.
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Veras Lifeline To Help Her Get Out Of Severe Me/cfs
Dan: And where do you go to?
Vera: Mostly, Id try to sleep and just not be awake. Yeah, it was horrible. If I didnt have the internet, I dont know if I would have survived because listening to audio books like, my eyes hurt, so it was hard to watch a lot of YouTube, but I listened to YouTube videos and that kept me alive, basically.
Dan: Like escapism?
Vera: Yeah, but also the things that I learnt on YouTube accumulated into my recovery. It started as an escape but ended up being like a life raft.
Dan: What kind of things did you listen to?
Vera: I discovered self-help for the first time. That really planted seeds within me that you can actually change your life and you can actually grow and heal and discover yourself and get to know yourself. That was exactly what I needed.
I was watching a lot of Lavendaire on YouTube. She has a lot of journaling prompts and stuff which is really nice, and she has a podcast, and a guest on that podcast had a story that ended up changing my life that led to me trying the treatment that ended up in my recovery. It was like a chain of events that Im so grateful for.
Dan: As I talk to people when theyre in these dire situations, you know, we make these projections. I mean, like you were thinking, Okay. Im never going to walk. Im never going to get my life back. Im going to be in a wheelchair or bedbound. You know, all of this is conjecture. Its not fact. Its a possibility, but its not a fact.
Dan: Your stimulus.
Discipline To Aid Recovery
Discipline and sleep hygiene
Discipline and social interactionSomeone suffering from ME/CFS has to accept the fact that they’ll be very dull for at least the next 6-9 months. Having no energy robs you of your personality: social interaction of any kind, even with family, requires energy, and it’s easy to overdo it when focusing on someone else. Even if you feel great, limit seeing friends as much as possible, because the gains that you’ve made by being disciplined for weeks can be wiped out very quickly indeed. There’s no escaping the fact that this illness is brutal.
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Eat Small Meals Frequently To Avoid Sugar Spikes
During your burnout recovery, you want to ensure that youre being as gentle with your blood sugar levels as possible.
The worst thing you could do is consume two or three massive, overly processed meals per day. The best thing you can do is eat four to six small, nutrient dense meals per day. More on this in the next two points.
Vera Watched Videos About Trauma And Meditation Then She Experienced The Internal Healing Process
Dan: What were the books that you found were the biggest uplifting moments? What were the early books? What gave you the idea that you could possibly do something? I mean, you mentioned, obviously, you listened to one podcast, but can you sort of share any other experiences?
Vera: I started watching videos on trauma on how to heal from trauma. I guess I had this knowing that, at some in my life, I would have to work through the emotional trauma Id been put through, and I just got so interested in this, and I remember reading The Completion Process by Teal Swan. Like, if you feel your feelings, they actually go away like youre clearing them out. If you avoid feeling and remembering, then you will just carry it along with you and it will fester in you. I was just like, This makes so much sense!
When I was in bed excuse me I was trying to begin this internal healing process, but it was too early because I was still being traumatized. Like, theres no point in trying to heal while youre still being stabbed, you know, but like everything I learnt about this, Ive been doing now after Ive recovered, and it has changed my life, and is still changing my life.
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Vera Explains The Procedure Of Panchakarma Treatment For Me/cfs With The Help Of Her Ayurvedic Practitioner
Vera: Yeah, and you are, like, lacking fats and moisture and insulation in your nervous system. Its so simple, but so genius, but it feels hard to see. Like, I noticed little changes like, my skin became better but the fatigue was still very strong, but I actually found an Ayurvedic practitioner in my city, in the middle of nowhere, Norway, that had just moved here two years ago.
She came to my house. On the first consultation, she told me not that long ago that she remembers that, and I was having trouble sitting up and looking at her. My eyes couldnt focus. I was just, like, swaying and my eyes were, like, blurry, but she came to my house together with this Indian doctor which we Skyped with who is a doctor in Western medicine and Ayurveda. Designed treatment for me.
Dan: What was that treatment?
Vera: Its called Panchakarma. That means five actions in Sanskrit. They have five major treatments and tools to choose from, depending on the case. So, I didnt do all the five. I did three. Also, herbs. So, yeah, Ill start from the beginning.
Panchakarma is a very gentle and mild kind of a cleanse. There might be a little bit of fasting in there, but not like the fast that we know in the west now where theres five days. An Ayurvedic fast will look more like two days of eating soup with spices. Its gentle.
Dan: So, where did you go to sweat?
Dan: Literally only rice and lentils?
Vera: Yes, with spices.
Dan: At least it would taste of something with the spices.
Chronic Fatigue Syndrome: A Post
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More than a year since the start of the coronavirus pandemic, the world is making progress, thanks to vaccines, treatments, and life-saving hospital care, but why are some patients still living with symptoms months after they are said to have recovered from the deadly virus?
Long Haul Coronavirus Symptoms As A Current Public Health RealityCOVID-19 ‘Long-Haul’ Symptoms And Chronic Fatigue SyndromeWhy The Persistent Symptoms In Long-Haulers?1.Excess Inflammation2.An Auto-Immune Response3.Nervous Dysfunction4.Blood Clots and Blood Vessel Damage
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What Is Chronic Fatigue Syndrome
Chronic fatigue syndrome is a complicated disease for doctors to diagnose and even fully understand.
CFS is a physical condition, but it can also affect a person psychologically. This means that someone with CFS may feel physical symptoms, such as being very tired and weak , headaches, or dizziness. But the person may also notice emotional symptoms, such as a loss of interest in favorite activities.
To make it even more complicated, different people with CFS can have different symptoms. And the symptoms of CFS often are similar those of other health conditions, like mono, Lyme disease, or depression. And the symptoms can vary over time, even in the same person.
This makes treating the illness complicated because no single medicine or treatment can address all the possible symptoms.
What We Know Now
As I discussed in a recent article in the journal JAMA, research has documented underlying biological abnormalities involving many organ systems in people with ME/CFS, compared with healthy controls. Heres an overview of what the current science suggests.
The brain. Tests of brain hormones, formal tests of thinking, magnetic resonance imaging , and positron emission tomography scans of the brain are abnormal in a substantial fraction of patients with ME/CFS. Tests of the autonomic nervous system, which controls vital functions including body temperature, blood pressure, heart rate, breathing rate, and movement of the intestines and bladder, also are abnormal. Not all of these abnormalities of the brain are present in every person with ME/CFS, and they appear to come and go.
Energy metabolism. We are alive because the cells of our body are alive. And theyre alive because they can make energy, and use that energy to do their jobs and remain alive. Our cells make energy out of the oxygen in the air we breathe, and out of the sugars, fats, and proteins we eat. In ME/CFS, research has shown that the cells have trouble both making and using energy. That is, people with ME/CFS feel they dont have enough energy because their cells are not making enough, nor using what they make efficiently. The ability of cells to extract oxygen from the blood and use it to make energy appears particularly defective after physical and mental exertion.
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Moving Beyond Diagnosis To Find The Causes
I learned firsthand the struggle to understand fatigue-related disorders when a personal encounter with debilitating fatigue around age 50 forced me to see them differently than most physicians. After years of intense night call as an OB/GYN and keeping some pretty poor health habits, I was gradually propelled into chronic misery and had to give up my practice as a result.
I experienced the full range of symptoms common to chronic fatigue syndrome. And like most sufferers, I struggled between a diagnosis of CFS and fibromyalgia, but ultimately chose fibromyalgia because of pain issues. Later, after a tick bite with a bulls eye rash, I concluded that I had been suffering from chronic Lyme disease all along.
Now, after more than a decade of research and trial and error with nearly every possible conventional and alternative treatment, Im finally well again. In the process, Ive also come to the conclusion that all three of these illnesses chronic fatigue syndrome, fibromyalgia, and chronic Lyme are variations of the same fundamental problem: Loss of energy that can be sourced to mitochondrial dysfunction and disrupted communications within the body.
The list of possible coinfections includes mycoplasma, bartonella, babesia, anaplasma, ehrlichia, and rickettsia, but new microbes are being added to the list on a regular basis. In addition, most everyone with chronic Lyme disease is also found to have reactivation of EBV and a variety of other viruses.
Diagnosis Of Chronic Fatigue Syndrome
Laboratory tests to exclude other causes of symptoms
At least one of the following manifestations is also required:
Feeling of light-headedness or dizziness when standing up that is relieved by lying down
The frequency and severity of the symptoms should be assessed by a doctor. If people do not have these symptoms at least half of the time with moderate, substantial, or severe intensity, doctors reconsider the diagnosis of chronic fatigue syndrome .
Criteria for diagnosis are important mainly because they help doctors communicate clearly with each other when they study a problem. However, when treating a specific individual, doctors focus more on that person’s symptoms rather than the criteria.
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