Tributes To ‘warrior’ Woman 32 Who Died After Battle With Chronic Fatigue Syndrome
Kara Jane Spencer was diagnosed with the illness 15 years ago
- 21:04, 8 JAN 2023
Tributes have been paid to a woman who died after suffering with chronic fatigue syndrome.
Kara Jane Spencer, who was an Edge Hill student, fell ill with a severe form of myalgic encephalomyelitis 15 years ago. This left Kara unable to walk and needing around the clock care.
Her loved ones announced on her website that the 32-year-old, from Derbyshire, died on Monday, January 2 surrounded by family. Despite having ME symptoms while at university she went on to graduate in 2012 and perused a career in the arts. In 2020 she topped the charts with her hit album, Its Still ME, created to raise funds for the ME Association.
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Those who knew Kara from Edge Hill University described the disability advocate as a “warrior”.
Karas Personal Tutor and Programme Leader for Drama Emma Heron said: Kara arrived a warrior, determined to get the most out of every opportunity the university could offer. Despite significant health challenges that worsened over her three years of undergraduate study Kara went on to graduate with a 2:1.
During the pandemic, as only Kara could, she successfully drew together a team of musicians to help her to record an album which climbed the charts. She was an amazing person, and all of our hearts go out to her and her family.
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What Is The Prognosis
The clinical course of CFS varies considerably among persons who have the disorder. The actual percentage of patients who recover is unknown, and even the definition of what should be considered recovery is subject to debate. Some patients recover to the point where they can resume work and other activities, but continue to experience various or periodic CFS symptoms. Some patients recover completely with time, and some grow progressively worse. CFS follows a cyclical course, alternating between periods of illness and relative well being.
What Are The Signs & Symptoms Of Chronic Fatigue Syndrome
Someone with chronic fatigue syndrome can have many possible symptoms. The most common ones include:
- severe fatigue, which can make it hard to get out of bed and do normal daily activities
- sleep problems, such as trouble falling or staying asleep, or not having a refreshing sleep
- symptoms getting worse after physical or mental effort
- symptoms or dizziness that get worse after standing up or sitting upright from a lying down position
- problems with concentration and memory
- headaches and stomachaches
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Myalgic Encephalomyelitis/chronic Fatigue Syndrome: Essentials Of Diagnosis And Management
- Alison C. BestedAffiliations
- Lily ChuCorrespondenceCorrespondence: Address to Lily Chu, MD, MSHS, Independent Consultant, 16 Lorton Ave, Unit 4, Burlingame, CA 94010.
- Nancy G. KlimasAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
- Jose G. MontoyaAffiliationsDr Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation Research Institute, Palo Alto, CA
- Irma R. ReyAffiliationsInstitute for Neuro Immune Medicine, Dr Kiran C. Patel College of Osteopathic Medicine, Nova Southeastern University, Fort Lauderdale, FL
Drug And Alternative Therapies
Specific chronic fatigue syndrome symptoms such as pain, depression, and poor sleep are treated.
Many different drugs and alternative therapies have been tried to relieve the chronic fatigue itself. Although many treatments, such as antidepressants and corticosteroids, seem to make a few people feel better, none are clearly effective for all. It can be hard for people and doctors to tell which treatments work because symptoms are different in different people and because symptoms may come and go on their own.
Controlled clinical trials The Science of Medicine Doctors have been treating people for many thousands of years. The earliest written description of medical treatment is from ancient Egypt and is over 3,500 years old. Even before that, healers… read more , which compare the benefits of a drug to those of a placebo , are the best way to test therapies, and no drug therapy has been shown to be effective for the treatment of chronic fatigue syndrome in controlled trials. A number of treatments directed at possible causes, including use of interferons, intravenous injections of immune globulin, and antiviral drugs, have been mostly disappointing and potentially dangerous. Dietary supplements, such as evening primrose oil, fish oil supplements, and high-dose vitamins, are commonly used, but their benefits remain unproved. Other alternative treatments have also been ineffective. Treatments that have no proven benefits are best avoided because they can have side effects.
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Is There Any Treatment
There is currently no cure for CFS. The therapies for this disorder are directed at symptom relief. It is important to maintain good health by eating a balanced diet and getting adequate rest, exercising regularly without causing more fatigue, and pacing oneself because too much stress can aggravate the symptoms of CFS. Working with a physician to develop a program that provides the greatest benefits also will help in reducing frustration with the illness.
Non-pharmacological therapies include acupuncture, aquatic therapy, chiropractic, cranial-sacral, light exercise, massage, self-hypnosis, stretching, tai chi, therapeutic touch and yoga. Certain psychotherapies such as cognitive behavioral therapy also have shown promise for facilitating patient coping and for alleviating some of the distress associated with CFS.
In pharmacological therapy there is a variety of medications that can relieve specific symptoms. It is important to begin with low doses and to escalate the dosage gradually as necessary.
Some CFS patients may also find it therapeutic to meet with other people who have this illness, and this can be accomplished by joining a local CFS support group. Support groups are not appropriate for everyone, and may actually add to their stress rather than relieving it.
What Is The Latest Research On Me/cfs
Today, we have a better understanding of ME/CFS, but researchers are still searching for the cause. ME/CFS is sometimes seen in members of the same family, perhaps because of a genetic link. Researchers are also testing a variety of treatments for ME/CFS, including anti-viral medications and medications that affect the immune system.
Researchers also are looking at ways to help health care providers identify and diagnose ME/CFS more quickly. HHS currently supports a study led by the Institute of Medicine to recommend improved and updated criteria to help physicians make a diagnosis of ME/CFS. The IOM’s recommendations may also guide future research.
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How Will Me/cfs Affect My Quality Of Life
Not everyone will experience the same symptoms so itâs important not to compare people with ME/CFS. People with ME/CFS can have very different experiences of the condition and how long their symptoms last.
The impact of symptoms can be:
As symptoms change over time so does the impact they have on peopleâs lives.
What Is The Outlook For Someone With Chronic Fatigue Syndrome
The long-term outlook varies quite a bit. There may be times when your symptoms are not too bad and other times when they flare up and become worse. However, many people improve over time and some recover well. Children and younger people have a better rate of full recovery. Early diagnosis and treatment may lessen the impact of the illness. The important thing to remember is that this is not a progressive or life-threatening disease and that for many people full recovery is possible.
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What Are The Treatments For Chronic Fatigue Syndrome
There is no cure or approved treatment for CFS, but you may be able to treat or manage some of your symptoms. You, your family, and your health care provider should work together to decide on a plan. You should figure out which symptom causes the most problems and try to treat that first. For example, if sleep problems affect you the most, you might first try using good sleep habits. If those do not help, you may need to take medicines or see a sleep specialist.
Strategies such as learning new ways to manage activity can also be helpful. You need to make sure that you do not “push and crash.” This can happen when you feel better, do too much, and then get worse again.
Since the process of developing a treatment plan and attending to self-care can be hard if you have CFS, it is important to have support from family members and friends.
Don’t try any new treatments without talking to your health care provider. Some treatments that are promoted as cures for CFS are unproven, often costly, and could be dangerous.
Centers for Disease Control and Prevention
What Else Could It Be
Many people who have ME/CFS have other conditions, too. If you get treated for those, it might also improve your chronic fatigue.
ME/CFS can look a lot like âmonoâ , Lyme disease, lupus, multiple sclerosis, fibromyalgia, sleep disorders, or depression. It affects about 2.5 million Americans, but experts believe only about 20% are diagnosed.
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What Should You Do After A Chronic Fatigue Syndrome Diagnosis
If youve just been diagnosed with chronic fatigue syndrome, you will likely be somewhat confused. The lack of good information available about chronic fatigue syndrome means that finding out knowing what to do is sometimes tough.
As your doctor will likely tell you, the first step is learning how to manage your condition. The treatment options for chronic fatigue syndrome are usually things like antidepressants and lifestyle changes like maintaining a healthy diet and getting enough exercise. Unfortunately, there is currently no cure for chronic fatigue syndrome. So if youve just received a chronic fatigue syndrome diagnosis, odds are good that, barring the later development of an effective cure, you will be managing this condition for the rest of you life.
That might sound daunting and it absolutely is. But the fact is that you arent alone. You can reach out to a wide network of people who suffer from chronic fatigue syndrome and similar conditions all over the world. Just a few years ago this wasnt the case. So take advantage of that extra web of connection.
Tell us in the comments if youve just been given a diagnosis and theres a good chance that someone in the comments will be able to give you some advice or encouragement. So let us know, did you just get a chronic fatigue syndrome diagnosis? Are you worried that you might have the condition? Have you been living with chronic fatigue syndrome? Post about it below. Youre not alone.
Incorporate Stress Reduction Techniques
Josie was also encouraged to begin a regular meditation practice and to harness thoughts of gratitude, compassion, and peace, and to picture herself in a healthy state six months from that time. These types of visualizations and emotions are necessary on a daily basis in order for our bodies to heal.
When we spend much of our time with negative thinking and anxiety, our bodies perceive that we are in survival mode. If we live in a chronic state of survival, then our brains will be surrounded by high levels of cortisol and adrenaline which can eventually cause the size of our hippocampus to decrease and can even shrink our muscles. These effects contribute to feelings of fatigue. Meditation on a regular basis switches the brain from survival into healing and resting mode and will counteract these effects.
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How To Prove To Your Doctor Youve Got Chronic Fatigue Syndrome Me/cfs And Are Not Just Depressed
by Cort Johnson | Apr 26, 2014 | Depression, Diagnosis, Homepage |
Wrong diagnoses hurt. They lead doctors to prescribe treatments that dont work and may even be harmful and they keep doctors from prescribing treatments that do work. They waste patients money and, given the fact that the earlier a person is diagnosed with ME/CFS the better chance they have of improving their health, they contribute to poor health.
Many people with ME/CFS and FM are mistakenly diagnosed with depression first
The fact that only from 15-20% of people in the U.S. with Chronic Fatigue Syndrome have been diagnosed with it suggests wrong diagnoses run rampant in this disorder. Of all the wrong diagnoses, being diagnosed with depression is surely the most common.
Who has not been diagnosed with depression at some point? I was diagnosed with depression by my primary care provider only to have the psychologist I was sent to tell me, I know what depression is and youre not depressed.
I was lucky.
Fortunately, Dr. Lenny Jason has come up with a way to convince your doctor that youre not simply depressed. But first, a little history.
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I Don’t Have Insurance How Can The Affordable Care Act Help Me
If you’re uninsured or have been denied coverage in the past for ME/CFS, the Health Insurance Marketplace may be able to provide you with access to affordable coverage. With health insurance plans in the Marketplace, you can no longer be refused coverage just because you have a pre-existing health condition. Medicaid and the Children’s Health Insurance Program also can’t refuse to cover you or charge you more because of a health condition. They also can’t charge women more than men. Learn more about the Affordable Care Act and the Health Insurance Marketplace at Healthcare.gov.
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Guidelines For Diagnosing Me/cfs
Guidelines from the National Institute for Health and Care Excellence say doctors should consider diagnosing ME/CFS if a patient has extreme tiredness that cannot be explained by other causes and the tiredness:
- started recently, has lasted a long time, or keeps coming back
- means you cannot do the things you used to do
- gets worse after activity or gentle exercise, such as a short walk
You must also have some of these symptoms:
- problems sleeping, such as insomnia
- muscle or joint pain
- fast or irregular heartbeats
- doing exercise or concentrating makes your symptoms worse
The GP should consult a specialist if they’re unsure about the diagnosis or if you have severe symptoms.
If a child or young person under 18 has symptoms of possible ME/CFS, they may be referred to a paediatrician.
As the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected.
The diagnosis should be confirmed by a doctor after other conditions have been ruled out, and if your symptoms have lasted at least 3 months.
Page last reviewed: 29 October 2021 Next review due: 29 October 2024
The Me/cfs Profile From Bioreference
The ME/CFS Profile is a simple blood test that identifies certain diseases that may be the underlying cause symptoms. Antibodies, or markers, associated with conditions such as autoimmune diseases, thyroid disease, Lyme disease, viral infections and anemia are measured. In some cases, one of these tests will be positive, suggesting a known condition may have triggered your persistent fatigue. However, in some cases no underlying disease can be identified.
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Further Information On The Guidance
Methods
In developing the guideline, the guideline development group aimed to draft recommendations to promote access to appropriate care and support and to encourage a collaborative relationship between patients, carers, and professionals.
Formal consensus methods were used to develop this guideline. The guideline development group used ratings of appropriateness to agree on evidence statements and associated recommendations.6 This was supplemented by use of the same methods with a sample of people outside the guideline development group, including health professionals involved in the care of people with CFS/ME, patients with CFS/ME, and carers. The ratings of the wider group were used to inform the guideline group of the range of opinions among health professionals, patients, and carers and to highlight draft statements that were ambiguous or unclear.
NICE has produced four different versions of the guideline: a full version a quick reference guide a version known as the NICE guideline that summarises the recommendations and a version for patients and the public. All these versions are available from the NICE website . Future updates of the guidelines will be produced as part of the NICE guideline development programme.7
The National Collaborating Centre for Primary Care thanks Professor Rosalind Raine and her team for advice on the use of the consensus method, and the Centre for Reviews and Dissemination at York for their review of the evidence.
How Is Cfs Treated
Theres currently no specific cure for CFS.
Each person has different symptoms and therefore may require different types of treatment to manage the disorder and relieve their symptoms.
Work with your team of healthcare providers to create the best treatment plan for you. They can go over the possible benefits and side effects of the therapies with you.
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Talk With A Doctor About Creating A Treatment Plan That Works For You
Its important to remember that theres no one treatment for CFS. Everyone has different symptoms, so what works for one person may not work for another person.
If youve received a diagnosis of CFS, discuss your symptoms with your doctor and work together to develop a treatment plan thats right for you.
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.
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