Archive for category Fatigue

[WEB SITE] 17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’

Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re people may think your “tiredness” can be cured by a nap or early night, like theirs, not understanding the support you really need in that moment.

So we asked our Mighty community with chronic illness to reveal what they might actually mean when they say, “I’m tired.” It’s important for the people in your life to understand the challenges you’re dealing with and the empathy and kindness that can help you get through them.

 

Here’s what our community told us:

1. “Most people who are healthy don’t understand that ‘I’m tired’ is a very shortened phrase for us. When I actually admit to friends and family that I feel bad or am tired that means so much. That means I can no longer mask the symptoms I deal with on a daily basis and I need a little compassion to get through the next few hours or sometimes days.”

2. “When I say ‘I’m tired,’ I mean my body hurts to the point I can’t explain to a ‘normal’ person how bad it hurts. It means mentally, emotionally and physically I do not want to keep going. When I say ‘I’m tired’ I’m giving myself permission for a second to stop fighting my illness and to be vulnerable. When I say ‘I’m tired’ I’m trusting you enough to show you how I really feel before I get ready to get up and keep fighting again.”

3. “I don’t want to stop helping you, but I’m pretty sure I’m going to crumble if I do one more thing. So, just smile and nod as I go sit down and put my brace on.”

4. “Just sitting in a chair is exhausting. I just want to be able to melt into the floor because I don’t have the energy to hold myself up. I’m not sleepy, I’m exhausted!”

5. “When I say ‘I’m tired’ it means I don’t want to talk about it right now. It means I’m tired of the fight my body is constantly in against itself, I’m tired of being positive, I’m tired of pushing through the pain, I’m tired of never-ending procedures and continuous doctor appointments that tend to only discover new problems. I know everything will be OK and my faith will get me through this, but right now ‘I’m tired’ and don’t have the energy or the will to put that much effort in to finding the good in my situation.”

6. “‘I’m tired’ is code for: I’ve hit the exhaustion wall/power-off button; I don’t have the energy to explain the systemic overload my body and mind are experiencing; I need to be alone; I’m sorry I can’t do that for you right now, but I’m incapable of even doing that for myself.”

7. “Most of the time it actually means, ‘I know you mean well, but please give me some space. I’d like to be alone.’ Predominantly this is when I really am absolutely exhausted and have zero energy to consider those around me.”

8. “I’m mentally exhausted from having to keep it together on the surface at work, when what I really want to do is scream out loud with the pain. The majority of my day is spent ticking down the clock so I can go home and curl up and just be in pain out loud.”

9. “Half the time it means I don’t have any reason for feeling the way I do emotionally, mentally, or physically, but I feel I need to give one. The other half of the time it’s that I’m at my breaking point and there’s not enough rest or time away in the world to bring me out of it.”

10. “It’s usually my go-to response for pain, exhaustion, anxiety, everything. It’s easier than trying to explain something ‘normal’ people will never understand. Tiredness is something everyone can comprehend on some level.”

11. “I want, no need, to collapse right here. I’m in so much pain I want to cry, but it isn’t socially acceptable to do that. I can’t think straight enough to know my own name, let alone what I should be doing right now!”

12. “When I say I’m tired I mean I can’t keep smiling and acting as if nothing was happening. My whole day I try to show my best, I pretend to be the same person I was before the pain started. When I’m tired I cannot pretend anymore, I have to be who I am now.”

13. “I’m emotionally drained. But I don’t want to appear weak or go into details. Saying, ‘I’m just tired’ is simpler sometimes.”

14. “I say ‘I’m tired,’ but what I mean is I am fatigued beyond exhaustion, I can barely function, I feel like I haven’t slept in days, my body and mind ache for restful rest!”

15. “When I say I am tired, it means wherever I am could make a good place to lay down and hopefully sleep. The concrete floor over there? Yeah that looks like an amazing place.”

16. “I’m out of spoons. Of juice. Of battery. I physically cannot muster the energy needed to complete the task(s) being asked of me.”

17. “I’ll stare off into the brain fog and when someone notices, auto respond, ‘I’m just tired.’ It’s so much easier not to have to explain something you know they likely don’t understand. My being tired can’t be fixed. Take a nap, cured. If only it were that simple.”

Source: 17 Things People With Chronic Illness Mean When They Say ‘I’m Tired’ | The Mighty

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[WEB SITE] Helping Others Understand: Post-Stroke Fatigue

[Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: strokeconnection@heart.org.]


Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue. Some studies indicate that as many as 70 percent of survivors experience fatigue at some time following their stroke. Unlike exertional fatigue that we feel after working in the yard, post-stroke fatigue occurs from doing typical everyday tasks or sometimes from not doing anything. “It is a fatigue associated with the nervous system, which is quite difficult to understand,” said Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist in Falls Church, Virginia. “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”

That has been Roman Nemec’s experience since surviving an ischemic stroke 11 years ago. It doesn’t seem to matter how much sleep he gets, “I walk around tired all the time, even after 9-10 hours of sleep,” he said from his home in Georgia.

This can be difficult for friends and family members to get their heads around because they have not likely experienced this kind of brain fatigue. Bender-Burnett has asked her clients who were marathoners prior to their stroke to compare the fatigue one feels following a marathon to post-stroke fatigue: “They said the fatigue you feel after damage to the brain is unlike any fatigue they’ve ever felt,” she said.

While there is no standardized scale for post-stroke fatigue, Bender-Burnett says that therapists distinguish between two types of fatigue. “Objective fatigue occurs when we can see physical, mental or cognitive changes,” she said. “With subjective fatigue we don’t see any changes, but the survivor will tell you that they’re feeling extremely weary and have no energy.”

For some this goes on for a few months after their stroke, for others, like Roman, it is persistent. Fatigue may be a side effect of medication. “Post-stroke fatigue is very individualized,” Bender-Burnett said. “One of the most frustrating parts of post-stroke fatigue is that it’s so unpredictable. Today, getting up, brushing your teeth and putting on your clothes may be fine, but tomorrow you may not be able to complete the morning routine without a rest break. That unpredictability is very frustrating for people and makes reintegration into daily life difficult.”

Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”

Life consequences span the spectrum from nuisance to career-ending. It can impact a survivor’s ability to function in unpredictable ways: As they tire, they may become clumsy or their speech may be affected. Their ability to understand, comprehend or recall may be compromised. Some people get irritable, while others experience increased emotional lability (crying or laughing with no apparent trigger). Bender-Burnett has worked with people who have made remarkable recoveries but were not able to return to work because of post-stroke fatigue.

Just as the consequences are individualized, so are the responses. If your energy is better in the morning, then take advantage of that. For mental fatigue, the most effective response is to sit quietly with low sensory stimulation, not necessarily take a nap. Some survivors may require regular and scheduled rest breaks or even a nap; that does not work for Roman: “I just live through it,” he said. “There are worse things than being tired. I feel good; I can get around; I can talk. Life is good compared to what it could be. Being tired all the time is not a big problem.”

Rhonda Hand, whose significant other, Tarvin, is a survivor, said: “In our household the fatigue issue is factored in before any event or activity and recuperation time after an event or activity. We just block off rest time like another activity; if we don’t, everything shuts down, including speech. Over the years, we have become much more proactive in scheduling appointments with anybody. There is nothing before 8 a.m. That’s when deep sleep is happening.”

Knowing your limits — and quitting before you hit them — is key to living with post-stroke fatigue. Survivors with fatigue have limited energy reserves, and if they get depleted, they take longer to replenish. “You don’t want push to the point just before you’re exhausted, you want to end on a high note, leaving some reserves,” Bender-Burnett said.

“We’re still learning about post-stroke fatigue from the healthcare perspective, and so I think it’s important that we all be willing to recognize it and have open communication about it,” Bender-Burnett said. “I urge family members and friends to come from a position of compassion and understanding rather than expectation that everything should be better, because, much like depression, others can’t always see it but, if you’re feeling it, it can be quite limiting.”

 

The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke fatigue may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet  that you can print or share via email or socia

Source: Helping Others Understand: Post-Stroke Fatigue – Stroke Connection Magazine – Spring 2017

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[WEB SITE] All Fatigue is Not Created Equal: Why it Matters and What it Means for Pain Management

Have you ever felt so tired that you wished you could hibernate? Or so out of energy that you wanted to plug into a wall outlet and recharge?  Even if you haven’t, you’ve probably experienced the fatigue of a long day at work, a workout, or a poor night of sleep. This feeling is not only physical; emotional and mental fatigue can lead to irritability, difficulty concentrating, or in extreme cases, to locking ourselves in our room and watching reruns on television while our friends go out and enjoy themselves.

For people with chronic pain conditions, feelings of fatigue may be the norm rather than the exception. In fact, fatigue is one of the most common symptoms reported by patients with chronic pain, and increases as the intensity of the pain increases [1-2]. Chronic fatigue syndrome is highly comorbid with chronic pain conditions [3-4], and patients with fibromyalgia describe “fibro fog,” a set of symptoms characterized by difficulty with concentrating and performing other mental tasks [5].

Why does fatigue matter? It predicts low quality of life and poor functioning in a number of chronic pain populations [6-7], including cancer [8] and lower back pain [9]. In our work, we found that fatigue predicts low satisfaction with life in patients with chronic orofacial pain (pain in the head and face), and partially explains why pain is associated with psychological distress [2,10]. Yet, despite the negative impact of fatigue on functioning, it is still largely treated as a single symptom. Our team wanted to take a more nuanced approach and test whether different subtypes of fatigue (general fatigue, mental fatigue, emotional fatigue, physical fatigue, and vigor), as well as total fatigue (as a single symptom), predicted pain-related interference with social and recreational activities. To do this, we examined medical and psychological data from over 2,000 patients seeking treatment for chronic orofacial pains at a university orofacial pain center. A full version of the report can be found here [11], but below I summarize the main results.

First, total fatigue (as a single symptom) significantly predicted pain interference, above and beyond pain intensity, depression, psychological distress, and poor sleep! This suggests fatigue is more than feeling tired or lacking energy and is likely influenced by a number of factors. In fact, there’s moderately strong evidence for a central governing mechanism that monitors an array of cognitive, emotional, and physiological inputs and produces feelings of fatigue to prevent catastrophic overexertion [12-13]. A pretty clever protective mechanism! How this central governor influences and is modulated by pain remains an exciting area for future research, and one with much clinical relevance.

A second interesting finding was that the fatigue subtypes did not overlap as much as might be expected (13 – 40% of shared variance). Most of the variance in any one type of fatigue was not accounted for by the other types, suggesting we can feel emotionally tired but physically energized, just as we can feel mentally tired but generally energized, for example. Think of a long airplane ride. After a few hours, you might feel eager to move but unable to concentrate. This nuanced condition of low physical fatigue but high mental fatigue is lost when we treat fatigue as a single symptom. Examples of being fatigued in one domain but not another abound, but pain research takes a less nuanced approach and treats all of fatigue as one and the same.

The reason this matters – and this is the third interesting finding- is that each of these fatigue subtypes predicts outcomes differently. In our study, physical fatigue and lack of vigor were the only two significant predictors of pain interference: general, emotional, and mental fatigue were not significantly associated. The more physically fatigued people felt, or the less energy they had, the more pain disrupted their social and recreational activities. This was the first study to look at how specific subtypes of fatigue predicted pain outcomes.

Clinically, these findings suggest that perhaps we should be looking at people’s fatigue profiles to target individualized treatment. If someone reports high mental fatigue, then simplifying medication regiments (and implementing physical aids that promote medication adherence such as alarm clocks and reminders) may be particularly important. If, on the other hand, someone else has particularly high physical fatigue, then a cognitive behavioral intervention aimed at reducing physical fatigue and improving exercise might be most helpful. And if a third person is particularly high on emotional fatigue, they might benefit most from learning emotion regulation strategies and interpersonal communication skills. Although these ideas sound good in theory, more work is needed on targeted interventions to fatigue subtypes to test if they would indeed promote successful outcomes in pain patients.

About Ian Boggero

Ian Boggero is a clinical psychology graduate student at the University of Kentucky, but is originally from Los Angeles and did his undergraduate studies at UCLA. His research interests involve the psychological and social factors that promote adaptive responses to pain. Clinically, he has worked with orofacial pain, chronic lower back pain, phantom limb pain, and fibromyalgia populations, among others. Aside from pain, Ian enjoys hiking, cooking, playing soccer and chess, but most of all, spending time with his wonderful wife (who also shares his clinical and research interest in management). For more information, please see https://psychology.as.uky.edu/users/iabo222

References:

  1. [1] Hunt IM, Silman AJ, Benjamin S, McBeth J, Macfarlane GJ. The prevalence and associated features of chronic widespread pain in the community using the ‘Manchester’ definition of chronic widespread pain.Rheumatol 1999;38(3): 275-279. doi: 10.1093/rheumatology/38.3.275
  1. [2] Boggero IA, Rojas MV, Carlson CR, de Leeuw R. Satisfaction with life in orofacial pain disorders: Associations and theoretical implications. J Oral Facial Pain Headache 2016; 30(2): 99-106. doi: 10.11607/ofph.1526.
  1. [3] Clauw DJ, Chrousos GP. Chronic pain and fatigue syndromes: overlapping clinical and neuroendocrine features and potential pathogenic mechanisms. Neuroimmunomodulat 1997; 4: 134-153. doi: 10.1159/000097332
  1. [4] Aaron LA, Burke MM, Buchwald D. Overlapping conditions among patients with chronic fatigue syndrome, fibromyalgia, and temporomandibular disorder. Arch Intern Med 2000; 160: 221-227. doi: 10.1001/archinte.160.2.221
  1. [5] Williams DA, Clauw DJ, Glass JM. Perceived cognitive dysfunction in fibromyalgia syndrome.J Musculoskelet Pain 2011; 19(2): 66-75. doi: 10.3109/10582452.2011.558989
  1. [6] Sturgeon JA, Darnall BD, Kao MCJ, Mackey SC. Physical and psychological correlates of fatigue and physical function: a collaborative health outcomes information registry (CHOIR) study. J Pain 2015:16:291-298. doi: 10.1016/j.jpain.2014.12.004
  1. [7] de Leeuw R, Studts JL, Carlson CR. Fatigue and fatigue-related symptoms in an orofacial pain population. Oral Surg Oral Med O 2005; 99:168-174. doi: 10.1016/j.tripleo.2004.03.001
  1. [8] Servaes P, Verhagen C, Bleijenberg G. Fatigue in cancer patients during and after treatment: prevalence, correlates and interventions.Europe J Cancer 2002;38(1): 27-43. doi: 10.1016/S0959-8049(01)00332-X
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  1. [10] Boggero IA, Kniffin TC, de Leeuw R, Carlson CR. Fatigue mediates the relationship between pain interference and distress in patients with persistent orofacial pain. J Oral Facial Pain Headache 2014; 28:38-45. doi: 10.11607/jop.1204
  1. [11] Boggero, I. A., Rojas Ramirez, M. V., & Carlson, C. R. (2017). All fatigue is not created equal: The association of fatigue and its subtypes on pain interference in orofacial pain. The Clinical Journal of Pain, 33(3), 231-237. doi: 10.1097/AJP.0000000000000391
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Source: All Fatigue is Not Created Equal: Why it Matters and What it Means for Pain Management

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[Abstract] Interventions for post-stroke fatigue.  

Abstract

BACKGROUND: Post-stroke fatigue (PSF) is a common and distressing problem after stroke. The best ways to prevent or treat PSF are uncertain. Several different interventions can be argued to have a rational basis. OBJECTIVES: To determine whether, among people with stroke, any intervention reduces the proportion of people with fatigue, fatigue severity, or both; and to determine the effect of intervention on health-related quality of life, disability, dependency and death, and whether such intervention is cost effective.

SEARCH METHODS: We searched the Cochrane Stroke Group Trials Register (last searched May 2014), Cochrane Central Register of Controlled Trials (The Cochrane Library, 2014, Issue 4), MEDLINE (1950 to May 2014), EMBASE (1980 to May 2014), CINAHL (1982 to May 2014), AMED (1985 to May 2014), PsycINFO (1967 to May 2014), Digital Dissertations (1861 to May 2014), British Nursing Index (1985 to May 2014), PEDro (searched May 2014) and PsycBITE (searched May 2014). We also searched four ongoing trials registries, scanned reference lists, performed citation tracking of included trials and contacted experts.
SELECTION CRITERIA: Two review authors independently scrutinised all titles and abstracts and excluded obviously irrelevant studies. We obtained the full texts for potentially relevant studies and three review authors independently applied the inclusion criteria. We included randomised controlled trials (RCTs) that compared an intervention with a control, or compared different interventions for PSF.
DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data and assessed risk of bias for each included trial. The primary outcomes were severity of fatigue, or proportion of people with fatigue after treatment. We performed separate analyses for trials investigating efficacy in treating PSF, trials investigating efficacy in preventing PSF and trials not primarily investigating efficacy in PSF but which reported fatigue as an outcome. We pooled results from trials that had a control arm. For trials that compared different potentially active interventions without a control arm, we performed analyses for individual trials without pooling.We calculated standardised mean difference (SMD) as the effect size for continuous outcomes and risk ratio (RR) for dichotomous outcomes. We pooled the results using a random-effects model and assessed heterogeneity using the I(2) statistic. We performed separate subgroup analyses for pharmacological and non-pharmacological interventions. We also performed sensitivity analyses to assess the influence of methodological quality. MAIN RESULTS: We retrieved 12,490 citations, obtained full texts for 58 studies and included 12 trials (three from the 2008 search and nine from the 2014 search) with 703 participants. Eight trials primarily investigated the efficacy in treating PSF, of which six trials with seven comparisons provided data suitable for meta-analysis (five pharmacological interventions: fluoxetine, enerion, (-)-OSU6162, citicoline and a combination of Chinese herbs; and two non-pharmacological interventions: a fatigue education programme and a mindfulness-based stress reduction programme). The fatigue severity was lower in the intervention groups than in the control groups (244 participants, pooled SMD -1.07, 95% confidence interval (CI) -1.93 to -0.21), with significant heterogeneity between trials (I(2) = 87%, degrees of freedom (df) = 6, P value < 0.00001). The beneficial effect was not seen in trials that had used adequate allocation concealment (two trials, 89 participants, SMD -0.38, 95% CI -0.80 to 0.04) or trials that had used adequate blinding of outcome assessors (four trials, 198 participants, SMD -1.10, 95% CI -2.31 to 0.11).No trial primarily investigated the efficacy in preventing PSF.Four trials (248 participants) did not primarily investigate the efficacy on fatigue but other symptoms after stroke. None of these interventions showed any benefit on reducing PSF, which included tirilazad mesylate, continuous positive airway pressure for sleep apnoea, antidepressants and a self management programme for recovery from chronic diseases.
AUTHORS’ CONCLUSIONS: There was insufficient evidence on the efficacy of any intervention to treat or prevent fatigue after stroke. Trials to date have been small and heterogeneous, and some have had a high risk of bias. Some of the interventions described were feasible in people with stroke, but their efficacy should be investigated in RCTs with a more robust study design and adequate sample sizes.

Source: Interventions for post-stroke fatigue. | Nursing VHL Search Portal

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[Abstract + References] The Nottingham Fatigue after Stroke (NotFAST) study: Factors associated with severity of fatigue in stroke patients without depression

To identify factors associated with post-stroke fatigue in a sample of stroke survivors without depression.

Cross-sectional cohort study.

Recruitment was from four stroke units in the UK.

Participants were assessed within four to six weeks of first stroke; those with high levels of depressive symptoms (score ⩾7 Brief Assessment Schedule Depression Cards) were excluded.

Participants were assessed after stroke on the Fatigue Severity Scale of the Fatigue Assessment Inventory, the Rivermead Mobility Index, Nottingham Extended Activities of Daily Living scale, Beck Anxiety Index, Sleep Hygiene Index, 6m walk test, and measures of cognitive ability.

Of the 371 participants recruited, 103 were excluded and 268 were assessed. Of the latter, the mean age was 67.7 years (SD 13.5) and 168 (63%) were men. The National Institutes of Health Stroke Scale mean score was 4.96 (SD 4.12). Post-stroke fatigue was reported by 115 (43%) of participants, with 71 (62%) reporting this to be a new symptom since their stroke. Multivariate analysis using the Fatigue Severity Scale as the outcome variable found pre-stroke fatigue, having a spouse/partner, lower Rivermead Mobility Index score, and higher scores on both the Brief Assessment Schedule Depression Cards and Beck Anxiety Index were independently associated with post-stroke fatigue, accounting for approximately 47% of the variance in Fatigue Severity Scale scores.

Pre-stroke fatigue, lower mood, and poorer mobility were associated with post-stroke fatigue.

 

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Source: The Nottingham Fatigue after Stroke (NotFAST) study: Factors associated with severity of fatigue in stroke patients without depression – Mar 01, 2017

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[WEB SITE] How Bad science misled millions with chronic fatigue syndrome patients

If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad.

Under court order, the study’s authors for the first time released their raw data earlier this month. Patients and independent scientists collaborated to analyze it and posted their findings Wednesday on Virology Blog, a site hosted by Columbia microbiology professor Vincent Racaniello.

The analysis shows that if you’re already getting standard medical care, your chances of being helped by the treatments are, at best, 10 percent. And your chances of recovery? Nearly nil.

The new findings are the result of a five-year battle that chronic fatigue syndrome patients — me among them — have waged to review the actual data underlying that $8 million study. It was a battle that, until a year ago, seemed nearly hopeless.

When the Lancet study, nicknamed the PACE trial, first came out, its inflated claims made headlines around the world. “Got ME? Just get out and exercise, say scientists,” wrote the Independent, using the acronym for the international name of the disease, myalgic encephalomyelitis. (Federal agencies now call it ME/CFS.) The findings went on to influence treatment recommendations from the CDC, the Mayo Clinic, Kaiser, the British National Institute for Health and Care Excellence, and more.

But patients like me were immediately skeptical, because the results contradicted the fundamental experience of our illness: The hallmark of ME/CFS is that even mild exertion can increase all the other symptoms of the disease, including not just profound fatigue but also cognitive deficits, difficulties with blood pressure regulation, unrestorative sleep, and neurological and immune dysfunction, among others.

Soon after I was diagnosed in 2006, I figured out that I had to rest the moment I thought, “I’m a little tired.” Otherwise, I would likely be semi-paralyzed and barely able to walk the next day.

The researchers argued that patients like me, who felt sicker after exercise, simply hadn’t built their activity up carefully enough. Start low, build slowly but steadily, and get professional guidance, they advised. But I’d seen how swimming for five minutes could sometimes leave me bedbound, even if I’d swum for 10 minutes without difficulty the day before. Instead of trying to continually increase my exercise, I’d learned to focus on staying within my ever-changing limits — an approach the researchers said was all wrong.

A disease ‘all in my head’?

The psychotherapy claim also made me skeptical. Talking with my therapist had helped keep me from losing my mind, but it hadn’t kept me from losing my health. Furthermore, the researchers weren’t recommending ordinary psychotherapy — they were recommending a form of cognitive behavior therapy that challenges patients’ beliefs that they have a physiological illness limiting their ability to exercise. Instead, the therapist advises, patients need only to become more active and ignore their symptoms to fully recover.

In other words, while the illness might have been triggered by a virus or other physiological stressor, the problem was pretty much all in our heads.

By contrast, in the American research community, no serious researchers were expressing doubts about the organic basis for the illness. Immunologists found clear patterns in the immune system, and exercise physiologists were seeinghighly unusual physiological changes in ME/CFS patients after exercise.

I knew that the right forms of psychotherapy and careful exercise could help patients cope, and I would have been thrilled if they could have cured me. The problem was that, so far as I could tell, it just wasn’t true.

A deeply flawed study

Still, I’m a science writer. I respect and value science. So the PACE trial left me befuddled: It seemed like a great study — big, controlled, peer-reviewed — but I couldn’t reconcile the results with my own experience.

So I and many other patients dug into the science. And almost immediately we saw enormous problems.

Before the trial of 641 patients began, the researchers had announced their standards for success — that is, what “improvement” and “recovery” meant in statistically measurable terms. To be considered recovered, participants had to meet established thresholds on self-assessments of fatigue and physical function, and they had to say they felt much better overall.

But after the unblinded trial started, the researchers weakened all these standards, by a lot. Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.

In addition, the only evidence the researchers had that patients felt better was that patients said so. They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness.

But the subjective reports from patients seemed suspect to me. I imagined myself as a participant: I come in and I’m asked to rate my symptoms. Then, I’m repeatedly told over a year of treatment that I need to pay less attention to my symptoms. Then I’m asked to rate my symptoms again. Mightn’t I say they’re a bit better — even if I still feel terrible — in order to do what I’m told, please my therapist, and convince myself I haven’t wasted a year’s effort?

Many patients worked to bring these flaws to light: They wrote blogs; they contacted the press; they successfully submitted carefully argued letters and commentaries to leading medical journals. They even published papers in peer-reviewed scientific journals.

They also filed Freedom of Information Act requests to gain access to the trial data from Queen Mary University of London, the university where the lead researcher worked. The university denied most of these, some on the grounds that they were “vexatious.”

Critics painted as unhinged

The study’s defenders painted critics as unhinged crusaders who were impeding progress for the estimated 30 million ME/CFS patients around the world. For example, Richard Horton, the editor of the Lancet, described the trial’s critics as “a fairly small, but highly organised, very vocal and very damaging group of individuals who have, I would say, actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients.”

Press reports also alleged that ME/CFS researchers had received death threats, and they lumped the PACE critics in with the purported crazies.

While grieving for my fellow patients, I seethed at both the scientists and the journalists who refused to examine the trial closely. I could only hope that, eventually, PACE would drown under a slowly rising tide of good science, even if the scientific community never recognized its enormous problems.

more —> How Bad science misled millions with chronic fatigue syndrome patients | Private Medical

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[WEB SITE] Preventing compassion fatigue is up to you | The Caregiver Space

Compassion fatigue is a weariness of body and spirit, caused by the never-ending demands of caregiving. This form of burnout can come on quickly, and before you know it, you feel like you’ve hit the wall. You may even wonder if you can continue to be a caregiver. There are steps you can take to alleviate the symptoms of compassion fatigue. Your goal is to stop compassion fatigue before it stops you.

  • Assess the situation. Exhaustion may cloud your judgment and things may not be as bad as they seem. If you are unable to do this on your own, ask for help.
  • Consider your overall health. Do you have physical problems of your own, such as arthritis, or a sprained ankle? Illness can slow you down and change our outlook.
  • Check your support system. Family members and friends may have moved away, and although you feel alone, you can shore up your support system. This takes time, and is worth your time.
  • Determine if you’re down or depressed. There’s a huge difference between the two and you need to know the differences. You’ll find helpful articles on the Internet and other resources at the public library.
  • Talk to a trusted family member, friend, or colleague. One person can get you through a dark time. Venting your feelings makes you feel better, but don’t share too much at once. You don’t want to wear out the other person.
  • Each day, try to have one meaningful conversation. This conversation may be with a health professional, another family caregiver, certified counselor, or religious leader. Contact a friend that you haven’t seen in weeks.
  • Build “me time” into your days. A few minutes of doing something you enjoy, such as knitting, can boost your spirits. You may even wish to sign up for an adult education course.
  • Stay physically active. A short walk, 15 minutes in your neighborhood, can change your outlook. Your loved one may belong to a health club and the two of you may exercise together.
  • Take care of you. Don’t let others tell you how to do this. You’re the person who knows you best, and what makes you feel good.
  • Retain selected social contacts. Options include going out for coffee, attending a meeting, or having dinner with friends. A few minutes away from the demands of caregiving can save your day.
  • Monitor your self-talk. Once negative self-talk gets started, it’s hard to stop it, and will continue unless you take action. When a negative thought comes to mind, try to balance it with a positive one.
  • Affirm your caregiving with words. Writing affirmations about caregiving can change your attitude in surprising ways. Keep your affirmations short. One-sentence affirmations are easier to write and remember.

Source: Preventing compassion fatigue is up to you | The Caregiver Space

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[Abstract] Fatigue detection and estimation using auto-regression analysis in EEG

Abstract:

Estimation of fatigue is a required criteria in the field of physiology. The estimation of muscle fatigue and its development in the brain signals can provide a level of endurance among athletes and limits of a persons in doing physical tasks. In this paper a technique for detecting and estimating the fatigue development using regression parameters for EEG signals is discussed. The study of 14 subjects was undertaken and analysed for the fatigue development using Auto-Regression(AR) model. The behaviour of the error function obtained is analysed for the prediction of the stages and limits of muscle fatigue development.

I. Introduction

Muscle fatigue is a phenomenon associated with the muscle contraction. It is understood as the reduction in the ability of maximal force generation by the muscle with time, during its stressing, as the muscle contraction keeps on increasing. The nervous system’s limitation to generate sustainable signals and the reduction of ability of muscle fiber to contract are two major factors contributing to fatigue development [1]. Fatigue development limits the performance and capability of the individual in sports, long stretch driving conditions and in rigourous day to day activities. Hence a parameter that can estimate the fatigue levels and provide a break point for maximum fatigue can be useful for physiology and in other areas such as labour. People working under mines can be monitored for the fatigue break point and the overall productivity of such areas can be increased by proper analysis. The fatigue development in a person can be analysed via number of methods based on physiological changes. These include Electroencephalogram (EEG), Elec-tromyography(EMG), and Heart Rate Variability(HRV). Zadry et.al. [2] reported the increase in alpha band power level of EEG with time for fatigue development [3]. Ali et.al. also reported increase in RMS values of different bands in EEG [4]. Few studies measure brain activity in light repetitive task using EEG [5] to measure drowsiness or fatigue on drivers [6] [7] and night work [8] [9]. The EEG analysis for overall fatigue has been the focus of research, but research for specific muscle fatigue detection has been limited. The EEG based detection of fatigue has the advantage of quantitative based assessment. But, for real time application perspective faster computational power and signal processing methods are required. One of the challenges based on EEG based approach is the disturbances and contamination of the signal from eyes blinking action, muscle noise by movements and instrumental noises like line noise, electronic interferences [10]. Another problem is imposed by the inter-variability and intra-variability in EEG dynamics accompanying loss of alertness [11].

Source: Fatigue detection and estimation using auto-regression analysis in EEG – IEEE Xplore Document

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[WEB SITE] Research Reports – Fatigue in traumatic brain injury patients – CNS

Abstract

OBJECTIVE: The goal of the study was to assess fatigue in traumatic brain injury patients (TBI), identify potential predictors of its occurrence and its impact on quality of life.
MATERIAL/PATIENTS AND METHODS: We conducted a cross-sectional descriptive study about 25 patients suffering from TBI conducted in the physical medicine and rehabilitation department. The fatigue assessment was performed by two scales: Fatigue Severity Scale (FSS) and EVA Fatigue (EVAF). Depression was evaluated by the HAD scale. Quality of life was assessed by (SF36) scale.
RESULTS: The average age of our patients was 32.19±12.37 with a sex-ratio of 3.5. Thirteen patients (52%) were victims of severe TBI. Fatigue was present in 64% of patients (FSS>36). The mean score calculated by the FSS scale was 42.64±16.43. The mean EVA Fatigue was 5.23±2.32. Depressive symptoms was found in 68% of TBI, 94% of them have expressed fatigue (P=0.01). The average score for quality of life assessed by SF36 was 43.63±15.8. We found a significant correlation between the FSS score and the SF36 score (P<0.01, r=-0.76). Fatigue was more common in males (P=0.01, r=0.53). In addition, fatigue was negatively correlated with the level of education (P=0.03, r=-0.44). However, fatigue was not related to the period length after TBI, the initial GSG score or to the age.
DISCUSSION-CONCLUSION: Fatigue is a persistent symptom after traumatic brain injury. It is often undervalued. Depressive symptoms may be responsible for its appearance. Fatigue had a significant impact on quality of life. The proposal for specific rehabilitation protocols taking into account the aspect of fatigue may be efficient for these patients.

Source: Traumatic Brain Injury Resource Guide – Research Reports – Fatigue in traumatic brain injury patients

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[WEB SITE] Neurofatigue / Invisible consequences /  

Fatigue fatigue fatigue, that is what people with brain injury often experience.

Everything takes effort. The energy for the whole day is often consumed completely within two hours. There are many brain injury victims who have insomnia ón top of this all. Another group of brain injury survivors have an increased need for sleep. But the similarity is FATIGUE.

Mental fatigue is different from physical fatigue.
We can all get an idea when talking about physical fatigue. Being tired after anexercise, after a brisk walk, after strenuous physical labor, after housework and so on.

Mental fatigue comes in thinking processes, learning and information processing,watching television extensively, doing computer actvities, but also solving problems,interpreting the behavior of other people and thinking logically.

A healthy person can also be mentally tired of all such functions if it is intense andlong enough. Healthy people can also come to a point that they become annoyed whenthe “energy” is low, and especially if that mental activity was filled with noise. It seems like you cannot endure radio or TV, or something like that, anymore.

For brain injury victims that is many times worse. The mental energy has already been exhausted after a short time. They use more parts of the brain, because the dead area must be passed by, in the communication between braincells.

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Neuro-fatigue is one of the most debilitating consequences of a brain injury, as it influences everything the injured person does, both physically and mentally. A person’s emotions can also become raw when they are tired.

At the beginning, the ABI survivor is likely to find out that he or she will be tired easily after any activity, even chatting to friends or watching television, but particularly after tasks that require concentration or physical effort. This can be very depressing, particularly if the individual is aware of this change.

They will often try to push themselves to complete a task in the belief that they might overcome their fatigue. This is seldom the right thing to do as it can lead to increased fatigue in long-term. It takes time to build up energy. Taking rest periods both in between activities and when feeling tired is essential.

More brain activity in brain injury patients

Scientists have discovered that the brain of a brain injured works harder and uses more braincells. To process information more nerve activity is shown. They try to make more interconnections to braincells.

More brain areas are involved in activities than before the brain injury. That difference can be seen with PET scans. Parts in the brain that normally show little activity in the conduct of an activity, become actively involved in the thinking process after a brain injury.

This requires many extra bypasses and energy. Therefore, the reaction is often a bit slower on a brain injured person and it requires more energy. For each brain signalbetween brain cells, needs electricity to be generated and that takes energy. It can make someone really tired.


Definition of fatigue in the scientific literature: the sense of a reduction in the capacityfor physical and / or mental labor, caused by an imbalance in the presence, the use and / or recovery of energy that is needed to perform activitiesAaronson et al (1999)

So….Brain injury = Top Sport. It deserves respect.

 

Fatigue management

Fatigue management is the starting point for a recovery. In order to manage fatigue, a person first need to accept that he or she does not have the same physical and mental stamina that he or she had before the accident.

 

Signals that the battery is running low

Tell-tale signs of fatigue can be a drawn, tense look, a pale or greyish pallor, glazed eyes, irritability and, ironically, too much activity in that the person may become restless, more distracted or more talkative and make an increased number of mistakes.

During the day, for some much earlier, the person get signals that the battery is running low.
For example, they notice that they are tired,  make more mistakes or loses concentration. Some people get headaches, others lose the overview or become irritated. These are signs that let you know that the bottom of the battery is in sight. It’s time to take a rest so that the battery can charge again.

Pay attention to bodily signals:

Do you get headaches, do you feel dizzy or feel a tension in neck and shoulders?

Pay attention to the way you do things:
Is the pace going down or do you make more mistakes than usual?

Please take notice of negative feelings: Are you cranky, you have somewhere lost interest in something, or do you feel irritated?

Please take notice of negative thoughts:

For example do you think: “I can’t take it anymore’, “How long is this gonna last?’

‘I feel inferior because I can not do it’, ‘It no longer interests me’ ?

Do you notice anything yourself these signs, ask people who know you well, whether they have in mind when your energy runs out. Ask them what signals they notice. A person’s emotions can become raw when they are tired.

 

Sleepingdisorders

Many brain injured suffer from sleeping disorders as well.

Read these factsheets..thanks to synapse.org.au

See for example our page on CSAS.

Lack of sleep has a negative effect on our cognition, mood, energy levels and appetite. The average person needs eight hours of sleep a night or will suffer from decreased concentration, energy and many other problems. These effects are multiplied many times by a brain injury.

Unfortunately, brain injury can often lead to a sleep disorder. The American Academy of Neurology reports that as many as 40 to 65 percent of people with mild traumatic brain injury complain of insomnia.

This can be hard to detect because people with brain injuries can also have a fatigue disorder. Although some may have problems with getting too much sleep, the usual sleep disorder is trouble sleeping at night, particularly problems with timing of sleep, then feeling drowsy during the day.

Causes

After a brain injury many find it not only difficult to sleep, but they are very easily awakened, sometimes dozens of times a night. On top of this, they may find themselves unable to sleep at all around 3 am, despite being desperately tired. Sleep will usually be very light, so the smallest noise brings the person instantly awake. Research suggests a major cause is disruption to normal release of certain quantities of certain neurotransmitters in the brain during sleep which causes “sleep fragmentation” due to waking up so often.

There can be a variety of other causes disrupting sleep. Discomfort from headache, neck pain or back pain will always make it hard to get to sleep. Depression is a common feature after a brain injury and survivors may find they fall asleep easily but wake up several hours before dawn, unable to sleep again. Anxiety and inability to handle stress are other problems for many. Negative thoughts whirring through the mind will usually make it very hard to fall asleep.

 

 

 

Resources: Brain injury-explanation, Rehabilitationcentre de Hoogstraat, Cognitive Therapy (Joke Heins, Rose Sevat, Corine Werkhoven) nebasnsg.nl, stroke association of The Netherlands, The rehab group ABI webportal

Source: Neurofatigue / Invisible consequences / Consequences | Braininjury-explanation.com

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