Hope Disappointment And Perseverance: Reflections Of People With Myalgic Encephalomyelitis/chronic Fatigue Syndrome And Multiple Sclerosis Participating In Biomedical Research A Qualitative Focus Group Study
Abstract:
BACKGROUND: The Clinical Understanding and Research Excellence in ME/CFS group at the London School of Hygiene & Tropical Medicine has supported and undertaken studies in immunology, genetics, virology, clinical medicine, epidemiology and disability. It established the UK ME/CFS Biobank , which stores data and samples from three groups: participants with ME/CFS, Multiple Sclerosis and healthy controls. Patient and public involvement have played a central role from its inception.
AIM: To explore the views of participants with ME/CFS and MS on CureME research findings, dissemination and future biomedical research priorities.
METHOD: Five ME/CFS and MS focus groups were conducted at two UK sites. Discussions were transcribed and analysed thematically.
RESULTS: A total of 28 UKMEB participants took part: 16 with ME/CFS and 12 with MS. Five themes emerged: Seeking coherence: participants reactions to initial research findings Seeking acceptance: participants explore issues of stigma and validation Seeking a diagnosis: participants explore issues around diagnosis in their lives Seeking a better future: participants ideas on future research and Seeking to share understanding: participants views on dissemination. Focus groups perceived progress in ME/CFS and MS research in terms of putting together a jigsaw of evidence through perseverance and collaboration.
How Is Ms Fatigue Different From Normal Fatigue
Fatigue in MS is different in many ways from the tiredness people may experience as the result of a long day at work or a late night out. Fatigue is also different from sleepiness, although staying in bed may be the only thing that seems to help at times. According to the National Multiple Sclerosis Society, people with MS commonly experience fatigue that persists daily, even after plenty of sleep, and worsens as the day goes on.
When fatigue affects people with MS in these ways, it may also be referred to as lassitude. MS fatigue is typically more severe than normal fatigue, and may interfere with work, school, and tasks of daily life. In fact, MS fatigue is a primary reason people with MS have to reduce work hours or stop working altogether.
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Ms Subtype And Disability
MS subtype and disease severity can affect the risk of fatigue. The Expanded Disability Status Score correlates with fatigue scores,,, though less strongly, perhaps, after adjusting for depression., A review of The New York State Multiple Sclerosis Consortium Database showed that fatigue consistently correlated with Expanded Disability Status Score. Fatigue appears to be more severe in patients with progressive subtypes of MS,, but this observation may in part be confounded by differences in disability levels.
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Theme 4 Seeking A Better Future: Participants Ideas On Future Research
Participantsâ suggestions on research topics tended, perhaps unsurprisingly, to be illness-specific.
The ME/CFS participants saw finding a physical cause for the illness as the main priority. They considered that researchers needed to be open to a wide range of possible disease causes including the investigation of immune function, mitochondrial function and potential triggers for ME/CFS such as vaccinations , viruses , diet, and chemicals or environmental toxins . They expressed particular appreciation of the use of gene expression profiling as a means of investigating potential dysfunction across physiological systems .
Participants also suggested comparing blood samples from PWME diagnosed according to specific diagnostic criteria to those with other forms of chronic fatigue, in the hope that this might offer clues about underlying illness mechanisms . Other comparisons suggested were of onset patterns or predominating symptoms. Participants noted that recovery rates for ME/CFS were better in children than adults, and suggested research to investigate this phenomenon.
Both ME/CFS and MS participants were intrigued by results which had found impact of illness on pain, fatigue and social function to be worse in ME/CFS than MS. Several ME/CFS participants wanted to see such comparisons extended, for example, to compare electronically measured activity and sleep .
The Central Nervous System Multiple Sclerosis
The extent of the central nervous system lesions found in MS tracks very well with the progression of the disease. Severe fatigue, however, can show up before the lesions are most prominent or before significant movement issues occur. This early occurrence of severe fatigue is probably why some people with ME/CFS and probably fibromyalgia are either misdiagnosed with MS or are given brain scans to determine if they have it.
The fatigue in MS is not correlated with the extent of the CNS lesions but may be associated with where lesions are found. The association of lesions in the prefrontal, temporal and hypothalamic regions of the brain with fatigue suggests that damage to these regions causes fatigue.Several hypotheses have been generated to explain why these lesions are causing fatigue
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Therapeutic Approach To Fatigue And Depression In People With Ms
Up to date, there is not enough evidence supporting the use of any medications for the treatment of MS-related fatigue . In clinical practice for fatigue treatment in people with MS are used amantadine, modafinil, and amphetamine-like stimulants . Amantadine is approved by the Food and Drug Administration for treatment of influenza and Parkinson’s disease and causes an increase in cholinergic and dopaminergic transmission. Modafinil is approved by the FDA for narcolepsy, shift-work sleep disorder, and obstructive sleep apnea with residual excessive sleepiness. Amantadine and modafinil have been tested in clinical trials for fatigue in people with MS, but their results have been conflicting . Recently, Nourbakhsh et al. in a randomized, double-blind trial compared the efficacy, safety, and tolerability of amantadine, modafinil, methylphenidate, and placebo in people with MS-related fatigue. The results of its study have shown no the superiority of these drugs according to placebo in improving MS-related fatigue, which might have been influenced by comorbid depression and other diseases, MS subtype, the severity of the physical disability, or use of DMTs. However, in post-hoc analysis modafinil and methylphenidate might have a marginal, but clinically significant effect on fatigue in patients with excessive daytime sleepiness, which suggests that excessive daytime sleepiness may lead to fatigue in some people with MS .
Using Your Energy Wisely
You may need to think ahead as you budget your energy each day. This can be tricky, but once you get into the flow of your routine, conserving your energy can be a smart way to battle your fatigue. A few ways to best utilize your energy include:
- Building rest times into your schedule, like an afternoon 20-minute power nap
- Planning energy-draining activities for the morning when you are less fatigued
- Asking your family to take on more of the heavy-duty household chores
- Using your scooter or wheelchair to get around throughout the day
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The Modified Fatigue Impact Scale
The Modified Fatigue Impact Scale, proposed by the Multiple Sclerosis Council for Clinical Practice Guidelines, has gained recognition among MS specialists as a reliable tool. Originally derived from the 40-item Fatigue Impact Scale , the MFIS contains only 21 items and offers a more multidimensional assessment: physical , cognitive , and psychosocial functioning . The total score is the sum of the 21 items. An abbreviated version that contains 5 items also exists. Besides its multidimensional features, other advantages of the MFIS include ease of use, good reproducibility, and strong correlation with FSS results .
Why Study The Obvious
I led what could only have been a collective chorus of DUH! when I read what seemed to me completely obvious.
It wouldnt be beyond reason to wonder why a study into something so very obvious would even be done.
And then I thought about it less emotionally and more analytically. Maybe documentation, via research studies like this, are exactly what we need .
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Fuel Your Body With High
Theres no specific diet for MS, but the NMSS recommends following a healthy diet thats low in fat and high in fiber. According to the NMSS, the foods you choose to eat affect your energy levels.
Consuming simple carbohydrates such as sugary foods and highly refined foods such as white bread, white rice, or pasta can cause blood sugar levels to spike and crash. The crash can exacerbate preexisting fatigue in persons with MS, explains Barbara Giesser, MD, neurologist and MS specialist at Pacific Neuroscience Institute at Providence Saint Johns Health Center in Santa Monica, California.
How can you avoid this? Regularly choosing high-quality foods can help, says Dr. Giesser. Good options include:
- Protein-packed options, like beans, nuts, and lean animal proteins
- Fiber-rich foods, like oatmeal, brown rice, and high-fiber breakfast cereals
- Fresh fruit and leafy green vegetables
- Fat-free or low-fat yogurt
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Mitochondrial Dysfunctions In Ms And Me/cfs
Table displays the similarities in mitochondral dysfunctions between MS and ME/CFS. In all, there is considerable evidence that mitochondrial dysfunction is heavily involved in the pathophysiology of both MS and ME/CFS. Production of ATP is suboptimal and levels are depleted in the brain and/or striated muscles. Decreased phosphocreatine synthesis rates following exercise is indicative of abnormal metabolic responses to exercise in MS and ME/CFS. Impaired oxidative phosphorylation is an issue in both disorders but accelerated glycolysis in muscles has been reported in people with ME/CFS but not in people with MS. Conversely, damage to the mitochondrial respiratory chain in neurons has been reported in MS but not in ME/CFS.
Table 5 Similarities in mitochondral and brain dysfunctions between encephalomyelitis disseminata/multiple sclerosis and myalgic encephalomyelitis/chronic fatigue syndrome
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Theme : Seeking Coherence: Participants Reactions To Initial Research Findings
All participants express a compelling need to make sense of their illness experience. Research was seen as a means to achieve this, offering hope of putting together a âjigsawâ of evidence which might provide answers . Participants seemed to be critically examining the research findings in the light of their own knowledge and personal experience, taking on an âinvestigatorâ role, rather than being passive recipients of research information.
Participants suggested that ME/CFS and MS are complex illnesses and that finding answers was also likely to be complex . They emphasized a need for interconnected thinking in which different physiological factors might contribute to the illness, including immune function , pathogens, particularly viruses , physical or emotional trauma and genetics . The role of environmental factors, food and chemicals in triggering CFS/ME onset and/or worsening symptoms was of particular interest .
A major concern voiced by PWME, was the need to differentiate between people whose ME/CFS is defined according to specific diagnostic criteria, and those with other forms of chronic fatigue , as without such clarification, research results could be distorted or diluted. ME/CFS participants requested that it would be made clear in publications that people with chronic fatigue who do not fulfil the criteria for ME/CFS are differentiated in UKMEB studies.
Overwhelming Disruptive And Difficult To Explain Fatigue Is The Most Common Ms Symptom
Everyone knows what it feels like to be tired. But MS fatigue is different from regular fatigue.
- It can come on suddenly, even after a good nights sleep.
- It generally worsens over the course of the day.
- It tends to increase with heat and humidity.
Your MS fatigue is likely to feel different from anything youve felt before.
It may feel totally overwhelming at times, yet it remains invisible to other people. It can be one of the hardest symptoms for family, friends, and colleagues to understand.
You might find that fatigue interferes with every aspect of your life. To combat fatigue and take back control, get to know this symptom, factors that can worsen it, and ways to manage your energy.
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Ongoing Research Is Needed
Research on fatigue and early MS continues to evolve. With research showing that fatigue in early MS may predict faster and more severe disease progression, neurologists are taking fatigue more seriously. More studies are needed, but its becoming clear that fatigue may be a key aspect of understanding early MS.
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Recommendations For Future Research
A key study objective was to find out what patients viewed as important in choosing directions for future research. The findings signpost a diversity of specific topics, including investigating subgroups within ME, immunological and mitochondrial dysfunction the role of chemical and environmental triggers in ME/CFS, and genetic, viral and immunological factors for MS. These research topics are congruent with the intentions of CureME and UKMEB, though the study adds specific suggestions which the team will endeavour to find ways of including within future research collaborations.
Participants called for researchers to be less concerned about claiming a âbreakthroughâ in medical science for their own work, and to put greater emphasis on contributing to a collaborative integration of research knowledge which might one day lead to a biomedical test, effective treatments or cure. CureME hopes to fulfil that request, not only in future dissemination, but in all interactions with the wider research community. Ours and other similar initiatives appear to indicate that the prevailing research culture is changing gradually towards the collaborative ethos participants wish to see.
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Iom Diagnostic Criteria For Cfs
- Presence of all three of the following symptoms:
- New-onset and often profound fatigue that
- Is not alleviated by rest.
- Is not the result of excessive exertion.
- Substantially impairs academic, professional, leisure, or social function for > 6 months
The Chalder Fatigue Scale
One of the most well-known fatigue scales, the Chalder Fatigue Scale was created for chronic fatigue syndrome patients. This 14-item instrument quantifies fatigue intensity in terms of physical and mental domains. Each item is quantified by a numeric value on a Likert scale, and a sum score is calculated. Higher totals indicate more fatigue. Advantages of this instrument include its ease of use and brevity: it can usually be completed within 2-3 minutes. Although it has demonstrated good internal consistency in patients with chronic fatigue syndrome, MS-specific assessments of validity and consistency for this instrument are lacking. Nonetheless, some investigators still regard The Fatigue Scale as a valuable instrument for clinical studies.,
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S To Overcome Chronic Fatigue Syndrome
Chronic Fatigue Syndrome is a chronic illness characterized by extreme fatigue that lasts for more than six months. This fatigue cannot be explained away by an underlying medical condition. In fact, one of the diseases principle challenges is that its impossible to diagnose with laboratory tests. However, some professionals believe it is closely related to adrenal fatigue or system wide inflammation of the body.
The process for diagnosis usually begins with ruling out possible underlying diseases and chronic conditions until the only choice left is chronic fatigue syndrome. Left untreated, it decreases stamina, memory and concentration.
Chronic fatigue syndrome can result in strained relationships with friends and family, especially when it remain undiagnosed and/or untreated. Guilt, anxiety and anger are all common emotional responses for those fighting chronic fatigue.
Currently, over 1 million Americans are suffering from this debilitating illness that manifests with a lack of energy and motivation, and women are 24 times more likely than men to be diagnosed.
The Fatigue In Multiple Sclerosis Chronic Fatigue Syndrome Me/cfs And Fibromyalgia
by Cort Johnson | Nov 27, 2015 | Brain, Cytokines, Homepage, Immune, Inflammation, Research |
What causes the severe fatigue in diseases like chronic fatigue syndrome , fibromyalgia and multiple sclerosis constitutes one of the great mysteries of medicine. For years fatigue was thought of as a minor symptom but researchers are beginning to recognize that severe fatigue is one of the most functionally debilitating symptoms that can occur.
Severe fatigue is finally getting some attention in some disorders and one of them is multiple sclerosis .
A recent review paper examining the roots of severe fatigue in MS provided an opportunity to see how fatigue is being produced in it and whether fatigue might be produced in similar ways in ME/CFS and FM.
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How Is Multiple Sclerosis Treated By Functional Medicine
Autoimmune disorders often start in the gut. When the gut starts to leak, foods like gluten are able to pass through the gut and pass into the bloodstream. As microscopic particles pass through the intestinal wall, they create inflammation that travels throughout the body. This inflammation leads to issues with autoimmunity, the root cause of Multiple Sclerosis.
Gluten in particular is a problem. The proteins in gluten resemble the proteins that are in myelin. So, when the body has an immune reaction against gluten, it also can start to attack the myelin which is coating the nerves. This is called molecular mimicry. The immune system is confused. While attacking food particles that your body is sensitive to, like gluten or dairy, it also starts attacking similar protein particles like the myelin.
Healing leaky gut and removing foods that might be causing sensitivities is a starting point for the functional approach. Other things might also be triggering these autoimmune reactions and each of them must be investigated and eliminated. This include mercury, mycotoxins, and other infections.
Finally, the immune system must be supported with the appropriate nutrients such as omega-3 fish oils and vitamin D. Carefully increasing the nutrients in the daily diet and supplementing where appropriate is a critical step for healing the root cause of Multiple Sclerosis.
