Treatment Plans For Me/cfs
New research into chronic fatigue syndrome
There’s no single way of managing ME/CFS that works for everyone, but there are a number of treatment options.
The National Institute for Health and Care Excellence says you should be offered a treatment plan tailored to your symptoms.
Your doctor should discuss all of the options with you, and explain the benefits and risks of any treatment.
They should work with you to develop a treatment plan that suits you and takes into account your circumstances and preferences.
You may need advice about making lifestyle changes, specialist treatments, or a combination of both.
If your symptoms are severe, your doctor should ask a specialist for advice.
Your treatment plan should be reviewed regularly.
The Cortene Way: New Drug To Be Trialed In Chronic Fatigue Syndrome Me/cfs Soon
by Cort Johnson | Feb 8, 2018 | Brain, Cortene, Homepage, HPA axis, Treatment |
Research funding for chronic fatigue syndrome has been poor at best but clinical trials have elicited a wholly different degree of disappointment altogether. Few clinical trials are ever done and those often involve alternative approaches. The six active clinical trials listed in clinicaltrials.gov, for instance, include treatments like acupuncture, moxibustion, oral rehydration and CoQ10.
That makes it shocking to see a new drug a drug not being used in other diseases get a clinical trial in ME/CFS. It wasnt supposed to happen this way. First, its been assumed that repurposed drugs drugs already in use in other disease would be tested in ME/CFS to improve symptoms and only later, as we understood the disease better, would we get to a drug that gets at the core problems in ME/CFS. This group believes they have a drug that gets at the core of ME/CFS now, and in the first quarter of this year they expect to test that drug.
Over the next month, Health Rising will be publishing a 3 or 4-part blog series telling the story of the small group of researchers that are bringing a drug to ME/CFS they believe could get at the core of this disease.
Rather shockingly, a new drug a drug not being used in any other disease will soon be tested in ME/CFS.
- Part I Beginnings and the Hypothesis
- Part II The Hypothesis Pt. II
- Part III Treating ME/CFS and the Clinical Trial
Identify Treatments Youve Tried
In addition to tracking the symptoms you have experienced, keep a list of treatments you have tried. The Centers for Disease Control and Prevention provides a medications and supplements list you can use to track your medications, their dosage, how well they help, and if you experienced side effects. Write a separate list of other treatments you have tried beyond medications and supplements, such as cognitive behavioral therapy, exercise, acupuncture, or meditation.
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Other Lifestyle Changes To Manage Me/cfs
Other ways to manage ME/CFS include:
- equipment â some people may need a blue badge for parking, a wheelchair, a stairlift, or other adaptations for their home
- changes in your place of work or study â when you’re ready and well enough to return to work or studies, your doctor should be able to advise you on changes that could ease your return
There’s limited or no evidence to recommend:
- resting completely â there’s no evidence this helps
- complementary medicine â there is not enough evidence that it’s helpful for ME/CFS
You should not take up vigorous unsupervised exercise such as going to the gym or for a run as this may make your symptoms worse.
Common Drug Could Be A Simple Solution To A Complex Disease
A common drug could provide a simple but life-changing treatment for sufferers of chronic fatigue syndrome, world-first new research has discovered.
Griffith University researchers have identified in lab experiments that low doses of naltrexone reverse abnormal cell functions associated with chronic fatigue syndrome, which clinicians refer to as myalgic encephalomyelitis .
Myalgic encephalomyelitis, a highly stigmatised and misunderstood condition also known as chronic fatigue syndrome, can leave patients bed-ridden.Credit:Eddie Jim
ME is a complex disease that can present with many different symptoms, which meant it was underdiagnosed and misdiagnosed for many years.
It often leaves patients with extreme muscle soreness and fatigue, as well as extreme sensitivity to light and smells, among other symptoms. When the disease manifests, the lives of many sufferers are upended.
Griffith University professor Sonya Marshall-Gradisnik said their finding that naltrexone could treat the disease came on top of previous research also a world first in which the team proved that a defect in a specific ion channel in certain cells in the body, called TRPM3, was the cause of ME.
Its the first time these channels have ever been found to be faulty , and weve reproduced that four separate times, Professor Marshall-Gradisnik said.
Professors Sonya Marshall-Gradisnik and Don Staines from Griffith Universitys Menzies Health Institute.Credit:Griffith University
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Improving Hpa Axis Activity Naturally
Because there seems to be a connection between HPA axis functioning and CFS symptoms, it is important to make sure that your adrenals are working their best. Pay special attention to the lifestyle factors like sleep and stress reduction with mind-body activities for the best results. These are perhaps the most important factors for recovery of adrenal function and improvement of CFS symptoms.
Can Chronic Fatigue Be Treated
Every patient experiences chronic fatigue differently, and it is often accompanied other medical problems. It is essential to understand the root cause of each persons fatigue through a thorough medical history and assessment. Once this is done, a comprehensive holistic treatment plan may combine multiple therapies to address problems such as pain or depression, coupled with lifestyle changes, stress reduction, and other adjunct therapies.
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What Is The Latest Treatment For Chronic Fatigue Syndrome
Sadly Western medicine continues to seek treatment solutions only for parts of chronic fatigue symptoms. Happily, TCM has solutions based on over 2000 years of experience in treating these symptoms.
I firmly believe that Traditional Chinese Medicine is the only chronic fatigue syndrome treatment I recommend, for several reasons.
In the end, it is about curing not simply managing your Chronic Fatigue Syndrome and you will not be able to do that by managing parts of it with Western medicine. Only Traditional Chinese Medicine treats the whole of any persons CFS.
Why Is This Important
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Fibromyalgia Self Treatment
The new research finds many CFS/ME patients feel unsupported by health professionals, which can make the illness all the more distressing. Patients want to be listened to, have their symptoms believed and be given realistic support that takes their life circumstances into account. They also want their beliefs about CFS/ME to be acknowledged, even if they are different to current medical theories. However, the study also found that views about the condition are highly polarised. This means it is challenging for professionals to provide the kind of care people want for CFS/ME.
The researchers suggest healthcare professionals should give personalised, empathetic care to their CFS/ME patients, and suggest treatments that minimise the impact on daily life. They say health professionals should provide a sense of safety. This way, patients may feel more able to work through complex issues, such as the mental health implications of CFS/ME, without feeling defensive or dismissed.
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How Is Chronic Fatigue Syndrome Treated
Treatment is determined by your healthcare provider and based on:
- Your overall health and medical history
- Extent of the condition
- Your tolerance for specific medicines, procedures, or therapies
- Expectations for the course of the condition
- Your opinion or preference
- Medicine, including corticosteroids, antidepressants, and others
- Light-intensity aerobic exercise
- Dietary supplements and herbal preparations
- Psychotherapy and supportive counseling
Depression Stress And Anxiety
Adjusting to a chronic, debilitating illness sometimes leads to other problems, including depression, stress, and anxiety. Many patients with ME/CFS develop depression during their illness. When present, depression or anxiety should be treated. Although treating depression or anxiety can be helpful, it is not a cure for ME/CFS.
Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications. However, doctors should use caution in prescribing these medications. Some drugs used to treat depression have other effects that might worsen other ME/CFS symptoms and cause side effects. When healthcare providers are concerned about patients psychological condition, they may recommend seeing a mental health professional.
Some people with ME/CFS might benefit from trying techniques like deep breathing and muscle relaxation, massage, and movement therapies . These can reduce stress and anxiety, and promote a sense of well-being.
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Coenzyme Q10 Plus Nadh And Mitochondrial Dysfunction
Coenzyme Q10 and NADH are common antioxidant supplements that have been used for several decades as dietary supplements for general maintenanceof health. The benefits of their administration have been extensively evaluated in several conditions . However, several studies have shown that there is a mitochondrial dysfunction, which reduces the ATP production, as an immediate effect primary or secondary to symptoms in most CFS/ME patients .
In the UK, Myhill et al. highlighted the power and usefulness of the ATP profile test as a diagnostic tool for differentiating between patients who have CFS/ME and other symptoms as a result of energy wastage due to stress and psychological factors and those who have insufficient energy due to cellular respiration dysfunction. The biochemical tests should be performed in CFS/ME patients before and after appropriate interventions, and possibly in other disabling fatigue conditions as well .
Relatively few pharmacological or other therapies for CFS/ME have been tested in large RCTs. Overall, a report commissioned by the AHRQ based on a systematic review for a US NIH Pathways to Prevention Workshop concluded that no available pharmacotherapy is of proven benefit in CFS/ME. Table summarizes the current drug therapeutic strategies for CFS/ME.
Living With Chronic Fatigue Syndrome
Although experts have not yet found a cure for CFS/ME, many people who have the illness are able to make lifestyle changes and find treatments that allow them to reduce or manage their symptoms. Improvement is possible by living within your limits and working with a doctor to find treatments that help you. There are also many CFS/ME support groups both online and in-person. Meeting with such a group might prove to be helpful.
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Sleep Rest And Relaxation
You may have sleep problems that make your ME/CFS symptoms worse. For example, you may:
- have problems getting to sleep
- have unrefreshing or restless sleep
- need an excessive amount of sleep
- sleep during the day and be awake at night
You should be given advice about how to establish a normal sleeping pattern. Having too much sleep does not usually improve the symptoms of ME/CFS, and sleeping during the day can stop you sleeping at night.
You should change your sleep pattern gradually, and your doctor should review how it’s going regularly. If your sleep does not improve after making changes, you may have an underlying sleep problem that will need to be addressed.
It’s likely you’ll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.
If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. These problems, and how to avoid them, should be explained to you and your carers.
Chronic Fatigue Syndrome And Fibromyalgia: New Leads
Chronic fatigue syndrome and fibromyalgia are two of the most difficult diseases to diagnose. When you go to the doctor with a variety of bothersome symptoms, you hope for an answera definitive diagnosis, so that you can begin whatever treatment is necessary to feel better. The good news is that most illnesses and diseases can be pretty easily diagnosed with a lab workup or other testing methods.
Unfortunately, though, there are some conditions that are outliers in this regard. Their symptoms are vague or could be signs of dozens of disorders. There are no reliable tests to diagnose them. Most are misdiagnosed multiple times before an accurate finding is made. And sadly, many patients are blown off, told their symptoms are psychological or all in their head.
Some of the most frustrating of these diseases are chronic fatigue syndrome and fibromyalgia. And science has recently identified a common link that just might pave the way for new treatments.
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Addressing Low Thyroid Hormone Function
In Prolonged Critical Illness
As described above , clinicians began, as early as the 1970s, to suggest thyroid hormone supplementation for critically ill patients. The rationale was to correct what some considered a maladaptive hypo-metabolic state which was preventing recovery following severe infection or injury . Again, this approach remains controversial . Interestingly, there has been little research into pharmacological agents to correct the peripheral mechanisms, which to a large extent underpin the low thyroid hormone function during critical illness: i.e., the alterations in cellular thyroid hormone transporters, receptors, and deiodinases that convert thyroid hormones into their active and inactivated forms. Targeting these deiodinases could theoretically be an avenue for alleviating low thyroid hormone function during prolonged critical illness .
As described above, there are accounts of positive effects of thyroid hormone supplementation to address low thyroid hormone function in euthyroid ME/CFS and fibromyalgia . Proponents generally believe that thyroid hormone supplementation serves to compensate for dysfunctions in the conversion of thyroid hormones and/or uptake at cellular level , notably associated with inflammation in ME/CFS or fibromyalgia .
Mild Pain Relievers And Nsaids
Chronic Fatigue Syndrome – New Recovery Options
CFS/ME patients may benefit from NSAIDs, which are commonly used to relieve pain and reduce inflammation. In this context, the NSAIDs include ibuprofen and naproxen. They sometimes relieve frequent or severe joint and muscle pain, headaches, and fevers .
Other prescription medicines include anticonvulsants, also called antiseizure medicines. These drugs are sometimes prescribed for pain and sleep problems. They seem to work best when used for nerve pain. Antidepressant medicine is also prescribed to ease depression and anxiety, to enhance the ability to concentrate and to improve sleep quality . For their part, narcotic medicines are sometimes prescribed for pain that is not relieved by overthecounter drugs. Narcotics are generally reserved for the most severe cases because of the risk of addiction, and are used only for a short time .
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Treatments For Chronic Fatigue Syndrome
Since researchers do not yet fully understand the cause of chronic fatigue syndrome/myalgic encephalomyelitis and people with the illness can experience a wide variety of symptoms, multiple treatments exist. Treatments are aimed at managing and reducing the severity of CFS/ME symptoms, rather than at curing the illness.
Section Vii Agency Contacts
We encourage inquiries concerning this funding opportunity and welcome the opportunity to answer questions from potential applicants.
eRA Service Desk
Finding Help Online: Telephone: 301-402-7469 or 866-504-9552
General Grants Information Email: Telephone: 301-945-7573
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Pragmatic Rehabilitation: The Fine Trial
Pragmatic rehabilitation is a programme involving gradually increasing activity designed collaboratively by the patient and the therapist. In response to an earlier successful trial, a larger trial was conducted. In this trial, patients fulfilling 1991 Oxford CFS criteria who were allocated to pragmatic rehabilitation reported a statistically significant though clinically modest improvement in fatigue compared with patients allocated to either supportive listening or treatment as usual, but after 12 months followup the differences were no longer statistically significant nor was there was any significant improvement in physical functioning at any time. About 10% of the trial participants were nonambulatory and about 30% met 1994 London criteria for ME, but separate results for these groups were not published . An accompanying editorial gave some possible reasons for the failure to replicate the earlier success in this trial, and called for further research. The patients in this trial had higher comorbidity and disability than patients in the earlier trial and in most other trials, and received fewer sessions than most successful trials of CBT and GET. The editorial also raised the question of whether generalists are as successful as specialists in offering behavioural interventions .
Section Ii Award Information
Cooperative Agreement: A support mechanism used when there will be substantial Federal scientific or programmatic involvement. Substantial involvement means that, after award, NIH scientific or program staff will assist, guide, coordinate, or participate in project activities. See Section VI.2 for additional information about the substantial involvement for this FOA.
The OER Glossary and the SF424 Application Guide provide details on these application types. Only those application types listed here are allowed for this FOA.
Required: Basic Experimental Studies with Humans: Only accepting applications that propose clinical trial that also meet the definition of basic research.
RFA with multiple ICs/components :
The following NIH components intend to commit the following amounts in FY :
NINDS will commit $3,250,000 total costs per year over 5 years to support components that align with the mission of the Institute.
NIAID will commit $2,750,000 total costs per year over 5 years to support components that align with the mission of the Institute.
NHLBI will commit $500,000 total costs per year over 5 years to support components that align with the mission of the Institute.
NCCIH will commit $350,000 total costs per year over 5 years to support the components that align with complementary and integration health interests
NIAAA will commit $250,000 total costs per year over 5 years to support the components that align with the mission of the Institute.
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