Medical forum making fun of ME/CFS patients

Esther12 · May 10, 2012

SOC said: ↑

I don't agree. As I read it, Peggy-sue was saying that she was glad (as am I) that a person with the attitude demonstrated on that forum is not in the nursing profession.

Right... but that's quite an extreme statement. To be glad that someone was unable to complete their nurses training because of ill-health, based on a few of their posts on a forum, is pretty harsh.

I'm sure that lots of patients with disabling conditions will sometimes write in a way that sounds self-pitying - but it's still harsh and uncivil to attack them for being self-pitying without taking time to seriously think about their condition.

We can all respond in this sort of emotional way to the writings of others (I know I can), and some of the posts on that forum were particularly unpleasant and stupid, but I wanted to draw attention to the way in which their unpleasent stupidity was perhaps just a more extreme form of some of our own emotional response.

peggy-sue said: ↑

I do not take Bipolar Disorder lightly.

I didn't mean to imply otherwise. Sorry for taking your post as an example for my point, when I'm sure I could have found one of my own if I'd been willing to look for it... I didn't mean it to seem like a personal criticism.

SOC · May 10, 2012

Esther12 said: ↑

Right... but that's quite an extreme statement. To be glad that someone was unable to complete their nurses training because of ill-health, based on a few of their posts on a forum, is pretty harsh.

Not backing down on this one. It's not about her ill health. It's about her being a nasty person who shouldn't be in the nursing profession.

I'm sure that lots of patients with disabling conditions will sometimes write in a way that sounds self-pitying - but it's still harsh and uncivil to attack them for being self-pitying without taking time to seriously think about their condition.

Maybe she is self-pitying, but I didn't see any of it. I just saw her being nasty about sick people. Just because she is (or was) ill, doesn't mean she shouldn't be held accountable for what she says. I didn't see anyone here being "harsh and uncivil" or attacking someone for being self-pitying. I did see people objecting to the woman's hate speech, something I consider to be a civil responsibility (the objecting, not the hate speech )

We can all respond in this sort of emotional way to the writings of others (I know I can), and some of the posts on that forum were particularly unpleasant and stupid, but I wanted to draw attention to the way in which their unpleasent stupidity was perhaps just a more extreme form of some of our own emotional response.

Not the same. They are picking on sick people of their own initiative. Nasty for the fun of being nasty. They are accountable for that, just as we would be accountable if we suddenly started picking on, say, polio victims, just for the sake of laughs.

The concept of freedom of speech does not excuse one from responsibility for one's speech. It does not require that other people like one or continue to socialize with one if one speaks offensively.

Being offended by hateful speech is not the same as speaking hatefully. I don't accept that parallel.

madietodd · May 10, 2012

Rrrr said: ↑

Medical forum making fun of ME/CFS patients

This below link appears to be a forum of nurses and medical people who are focusing on making fun of ME/CFS in the most cruel way, including laughing at the most ill in our community.

I suggest folks from our community reply, but do so with information instead of with anger and simply attacking back, otherwise we risk confirming their misguided beliefs about us.

Also, at least one of them has infiltrated the ME/CFS forum Phoenix Rising and is posting there.

Start reading their forum here, and prepare to be horrified:
http://crass-pollination-forum.2287843.n4.nabble.com/Myalgic-Encephalomyelitis-td4607325.html

Is this known to be true? If yes, are they allowed to remain members here?

SOC · May 10, 2012

madietodd said: ↑

Is this known to be true? If yes, are they allowed to remain members here?

Somebody snatched a quote from here. Anybody could do that. Anybody can read these forums. There's nothing private about what's posted here. The person who grabbed the quote about Karina isn't necessarily a member -- and even if s/he is, if they haven't misbehaved here, I don't think they've imperiled their membership.

Maybe this is a good reminder to us all that this forum is not only not private, it's searchable by any search engine. What you say here is in the public domain and could easily be quoted elsewhere... as we've seen in this case.

What's really sad (and disgusting) is that of all the info here about the reality of ME/CFS, the person didn't learn anything, just snagged a bit to make fun of.

WillowJ · May 10, 2012

Amusingly, it seems I've already been unregistered from the other forum, without posting at all. And I was going to be very civil. In case anyone from there is reading here, this is what I wanted to post:

Rather than argue case studies and emotions and who is nice or not nice (I think most everyone could be kinder), it might be helpful to look at some actual research. Someone posted a recent study - a new definition combined with a review article - to the nurses' hangout and it doesn't seem to have been read, so here it is again:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Here's another useful review article and an etiological model:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166239/?tool=pubmed

Kindling might represent a heuristic model for understanding the etiology of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS). Kindling occurs when an organism is exposed repeatedly to an initially sub-threshold stimulus resulting in hypersensitivity and spontaneous seizure-like activity. Among patients with ME/CFS, chronically repeated low-intensity stimulation due to an infectious illness might cause kindling of the limbic-hypothalamic-pituitary axis. Kindling might also occur by high-intensity stimulation (e.g., brain trauma) of the limbic-hypothalamic-pituitary axis. Once this system is charged or kindled, it can sustain a high level of arousal with little or no external stimulus and eventually this could lead to hypocortisolism. Seizure activity may spread to adjacent structures of the limbic-hypothalamic-pituitary axis in the brain, which might be responsible for the varied symptoms that occur among patients with ME/CFS. In addition, kindling may also be responsible for high levels of oxidative stress, which has been found in patients with ME/CFS.

note the seizure activity, which could explain the seizure/migraine type symptoms of sensitivity to light and noise. unlike a migraine, for a severe ME patient, this abnormal brain activity does not stop, so she or he cannot go back to their usual life.

Here is a list of compiled studies (which I got just yesterday and haven't yet properly read):
http://bit.ly/IDQdWt
i.e. https://docs.google.com/file/d/0B7A...QxMC00YjM2LTg5MTMtZjM1NDZiMjZiZDE4/edit?pli=1

Some research which I've compiled over the past 3 years to use in cases just such as this:
(note that severe patients are almost never studied; these would be mild and moderate patients)

Is ME/CFS related to coping skills or to psychiatric condition or personality?

Eleanor Stein, MD, FRCP(C), "Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists" http://www.cfids-cab.org/MESA/Stein.pdf

Rate of psychiatric disorder in ME/CFS similar to other chronic, disabling medical conditions such as RA; about 30-40% (Thieme et al, 2004; Hickie et al, 1990; Fiedler et al, 1996). Type of questionnaire can affect prevalence (50% using DIS vs. 25% using SCID) in ME/CFS populations (Jason et al, 2003); DSMIV is recommended (Spitzer et al, 1992; Williams et al, 1992).
Rate of personality disorder is similar to that as the general populations (10%) and lower than in depression (Thieme et al, 2004) (Pepper et al, 1993; Saltzstein et al, 1998; Chubb et al, 1999). There are studies which report higher rates of psychological distress using the MMPI (Blakely et al, 1991) in CFS as compared with healthy controls, however it has been argued that MMPI is not an accurate assessment in people with chronic medical conditions because the items were derived and normed based with physical healthy subjects. When used in cohorts with chronic illness, the physical symptoms load to the hypochondriasis and hysteria scales resulting in false positives (Pincus et al, 1986; Goldenberg, 1989).
Despite the preponderance of research to the contrary, a group of primarily British psychiatrists continue to publish that ME/CFS is caused and exacerbated by faulty self-perception and avoidance behavior. [these] are personal opinions of the authors.

Unfortunately, the CDC uses a similar unscientific convention, even citing this same personal opinion-based group of mostly British psychiatrists, whom it hires as consultants.
Fossey et al. "Sleep quality and psychological adjustment in chronic fatigue syndrome." J Behav Med. 2004 Dec;27(6):581-605. PMID: 15669445

Narcolepsy and CFS participants were very similar on psychological adjustment... Our data suggest that primary sleep disorders in individuals with CFS are underdiagnosed in primary care settings and that the psychological disturbances seen in CFS may well be the result of living with a chronic illness that is poorly recognized or understood.

Christodoulou, Deluca, Johnson, Lange, et al. Examination of Cloningers Basic Dimensions of Personality in Fatiguing Illness: Chronic Fatigue Syndrome and Multiple Sclerosis. J Psychosom Res. 1999 Dec;47(6):597-607. PMID: 10661606

Both illness groups displayed similarly elevated levels of Harm Avoidance, and lower levels of Reward Dependence as compared with healthy controls. There was no evidence to suggest that patients with CFS possessed an unusual level of negativity that would have predisposed them to develop their illness.

Jason LA, Richman JA, Friedberg F, Wagner L, Taylor R, Jordan KM. Politics, Science, and the Emergence of a New Disease: The Case of CFS Am Psychol. 1997 Sep;52(9):973-83. PMID: 9301342

Wood, Bentall, Gopfert, Dewey, and Edwards's (1994) study found no support for the hypothesis that CFS participants respond to stress with physical symptoms rather than by expressing feelings. Ray, Weir, Cullen, and Phillips (1992) found no significant relation between indexes of perceived CFS illness severity (e.g., frequency of symptoms, course of illness, disability, and severity of illness) and emotional distress. Moreover, the lack of an independent relationship between these two variables could be one of the bases on which people with CFS attribute their illness to physical rather than psychological causes. Finally, if people with CFS present physical complaints to mask their psychological problems, then according to Katon and Walker (1993), there should be an inverse relationship between the number of depression and anxiety symptoms and the number of reported somatic symptoms. However, this has not been found. Rather, people with CFS who become distressed report somatic, depression, and anxiety symptoms concurrently (Katon & Russo, 1992; Katon & Walker, 1993).

How debilitating is the disease?

Anderson JS, Ferrans CE. "The quality of life of persons with chronic fatigue syndrome." J Nerv Ment Dis. 1997 Jun;185(6):359-67. PMID: 9205421

Overall scores on the quality of life index were significantly lower in CFS than for other chronic illness groups. Subjects reported the lowest quality of life scores in health and functioning domain. Indepth interviews provided a more complete understanding of the quality of life in CFS and further explained the low ratings that were found on the quality of life index. The findings suggest that quality of life is particularly and uniquely disrupted in CFS.

Komaroff AL, Fagioli LR, Doolittle TH, Gandek B, Gleit MA, et al. "Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups." Am J Med. 1996 Sep;101(3):281-90. PMID: 8873490

PATIENTS: The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502).
RESULTS: Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher.

Buchwald D, Pearlman T, Umali J, Schmaling K, Katon W. "Functional status in patients with chronic fatigue syndrome, other fatiguing illnesses, and healthy individuals." Am J Med. 1996 Oct;101(4):364-70. PMID: 8873506

Chronic fatigue syndrome (CFS) is a condition that may be associated with substantial disability Our objectives were to describe the usefulness of the SF-36 in CFS patients and to determine if subscale scores could distinguish patients with CFS from subjects with unexplained chronic fatigue (CF), major depression (MD), or acute infectious mononucleosis (AIM), and from healthy control subjects (HC) A strikingly consistent pattern was found for the physical functioning, role functioning, social functioning, general health, and body pain subscales, with the lowest scores in CFS patients, intermediate scores in AIM patients, and the highest scores in the HC subjects. The CFS patients had significantly lower scores than patients with CF alone on the physical functioning (P < or = 0.01), role functioning (P < or = 0.01), and body pain (P < or = 0.001) subscales. The emotional functioning and mental health scores were worst among those with MD Patients with CFS and CF have marked impairment of their functional status.

Cockshell SJ, Mathias JL. "Cognitive functioning in chronic fatigue syndrome: a meta-analysis." Psychol Med. 2010 Aug;40(8):1253-67. Epub 2010 Jan 5. PMID: 20047703

Evidence of cognitive deficits in persons with CFS was found primarily in the domains of attention, memory and reaction time Persons with CFS demonstrate moderate to large impairments in simple and complex information processing speed and in tasks requiring working memory over a sustained period of time.

Michiels V, Cluydts R, Fischler B, Hoffmann G, Le Bon O, De Meirleir K. "Cognitive functioning in patients with chronic fatigue syndrome." J Clin Exp Neuropsychol. 1996 Oct;18(5):666-77. PMID: 8941852

The patients displayed psychomotor slowing and impaired attention. The learning rate of verbal and visual material for patients with CFS was slower, and delayed recall of verbal and visual information was impaired.

Lange G, Steffener J, Cook DB, Bly BM, Christodoulou C, Liu WC, Deluca J, Natelson BH. "Objective evidence of cognitive complaints in Chronic Fatigue Syndrome: a BOLD fMRI study of verbal working memory." Neuroimage. 2005 Jun;26(2):513-24. Epub 2005 Apr 7. PMID: 15907308

Individuals with CFS appear to have to exert greater effort to process auditory information as effectively as demographically similar healthy adults. Our findings provide objective evidence for the subjective experience of cognitive difficulties in individuals with CFS.

What is the Prognosis?

Carruthers, et al. Myalgic Encepalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. J CFS, Vol. 11(1) 2003. Haworth Press.

In a nine-year study of 177 patients, 12% of patients reported recovery (68) Other studies (70,71,72,73,37) suggest that less than 10% of patients return to premorbid levels of functioning. As the criteria [of inclusion] become more stringent the prognosis appears to worsen (74).

(Carruthers is relying on Joyce for this bit)
Joyce J, et al. "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review." QJM. 1997 Mar;90(3):223-33.

Another five studies operationally defined chronic fatigue syndrome in adults and found that < 10% of subjects return to pre-morbid levels of functioning, and the majority remain significantly impaired in carrying out routine activities. Two of the studies also reported a substantial proportion of cases (10-20%) in whom symptoms worsened over the period of follow-up.

Avellaneda Fernndez A, Prez Martn A, Izquierdo Martnez M, Arruti Bustillo M, et al. "Chronic fatigue syndrome: aetiology, diagnosis and treatment." BMC Psychiatry. 2009 Oct 23;9 Suppl 1:S1. PMID: 19857242

The adjective debilitating is the disease's main feature In patients seriously disabled, who have been unable to work for more than five years, the probability of significant improvement in 10 years is less than 10-20%. This can be considered "permanent disability" in medical-legal terms (Royal Australasian College of Physicians Working Group Chronic fatigue syndrome. Clinical practice guidelines. MJA. 2002;176:S17S55).
Andersen MM, Permin H, Albrecht F. "Illness and disability in Danish Chronic Fatigue Syndrome patients at diagnosis and 5-year follow-up." J Psychosom Res. 2004 Feb;56(2):217-29.PMID: 15016582
CONCLUSION: CFS patients exhibit severe, long-term functional impairment. Substantial improvement is uncommon, less than 6%. Allergies and aspects of cognition may worsen, emotional adjustment often improves.

Valentijn · May 10, 2012

Some of the nastier posts are made by someone with both a neurological imbalance and a chronic pain condition, who believes that all it takes is a positive attitude to ignore it and enjoy life. I've got both issues with ME/CFS (without trying to ignore the pain), and I can sympathize with how those can make it difficult to exercise self-control.

Combining that pain and neurological imbalance with ignorance about diseases and the belief that medical conditions can be overcome with positive thinking, I do think it's possible for someone to say such horrible things without being a horrible person herself. People in that situation need compassion and understanding, and will only become more hostile in the face of disagreement or condemnation, no matter how reasonable and well-supported that disagreement is.

The real problem isn't that they don't understand ME/CFS or FM or MCS or whatever else ... the problem is that they're in pain and unable to cope with it.

Esther12 · May 10, 2012

SOC said: ↑

Not backing down on this one. It's not about her ill health. It's about her being a nasty person who shouldn't be in the nursing profession.

That's what I meant! It's really difficult to say if she's a nasty person or not. She's made some stupid and nasty posts, and I hope that I would not write about a group of people in that way... but maybe she was having problems with her medications, her own life, etc, and ended out writing things that she now regrets.

I'm sure that there are lots of CFS patients (myself included) who post stupid things (especially when exhausted!), but it would be unfair for others to jump to conclusions about patients based on just a few posts.

That's not to say stupid and unreasonable posts should not be condemned, and anyone can come up with excuses for being an arse - that doesn't mean that they're not an arse; but it did seem like one of the problems with that thread was the way in which posters slipped in to casually condemning those who they did not take the time or effort to try to understand... and I noticed a (less serious) aspect of that in my own response to them.

I did go on to read a couple of other threads on their about fibromyalgia, and they seemed even more stupid and thoughtless there, so don't want to act like I'm defending them... but I think it's best to try to hold higher standards for oneself than others, and focus on ones own flaws first. I wasn't trying to say peggy-sue's posts was anything like as bad as the ones over there, and agree with silverblade that the fact those other posters are working as medics in positions of authority makes there thoughtless prejudices particularly worrying (in the same way as the prejudices of the police cause particular problems for society), but I was just pointing out how all of us can sometimes be unreasonable in the judgements we make about others writing on the internet (what I realise is a rather uninteresting observation, now that I've repeated it to myself).

WillowJ · May 10, 2012

Understanding the ME/CFS research: Which CFS?

Jason LA, Najar N, Porter N, Reh C. "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition". J Disability Policy Studies. September 2009 vol. 20 no. 2 93-100.

The authors research group proposes that selection criteria for CFS cases have broadened and provides data indicating 38% of those with a Major Depressive Disorder were misclassified as having CFS under the new CDC empirical case definition.

Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846

Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our "understanding" of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition.

Even the more specific of the commonly used definitions, Fukuda (1994 CDC), does not make the hallmarks of ME, such as post-exertional malaise, required as diagnostic/selection criteria, so one cannot tell how many study participants have ME (myalgic encephalomyelitis, G93.3, the infectious neuro-immune disease the first CFS definition tried to describe). Other conditions besides MDD which can easily be included in a 'CFS' group include missed cases of lupus, MS, simple vitamin D deficiency, rare diseases, and so forth.

Jason et al. Politics, Science, and the Emergence of a New Disease: The Case of CFS Am Psychol. 1997 Sep;52(9):973-83. PMID: 9301342

Is CFS causally related to deconditioning, and does exercise improve ME/CFS? Does CBT?
Is there any evidence to support the use of pacing?

Carruthers et al. "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" J CFS, Vol. 11(1) 2003, pp. 7-115 (pp 46-49). http://cfids-cab.org/MESA/ccpc-1.html
Explains that most CBT/GET (cognitive behavioural therapy/graded exercise therapy) studies are done on fatigued patients using the name but not any specific criteria for CFS. Refusal and drop-out rates may be very high. Assessment is chiefly subjective. When used respectfully, cognitive therapy may be useful as an adjunct therapy. Some CF patients may see modest improvement from increased activity; but ME/CFS patients report adverse effects, consistent with the definitions and clinical and research findings.

Reasons for drop-outs are not typically assessed or recorded in studies on GET and CBT (which is a departure from normal research standards). However, drop-out rates are generally considered a proxy indicator of harm or other difficulty or dissatisfaction for the patients, and patient surveys reveal a high rate of patients advising that GET made them worse. In fact, GET is consistently rated the worst of all treatments tried. Yet GET remains a top recommended treatment.

Kindlon, T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME, Fall 2011;19(2):59-111. www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&tabid=501

51% of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT.
Issues involving the heterogeneity of subjects and interventions, tracking of adverse events, trial participants compliance to therapies, and measurement of harms using patient oriented and objective outcome measures are discussed.
The recently published PACE (Pacing, graded activity, and cognitive behavior therapy: A randomized evaluation) trial, which explicitly aimed to assess safety, as well as effectiveness, is also analyzed in detail.

Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027. Review. PMID: 18646067

Claims effectiveness based on symptoms of fatigue, a purely subjective measure, and states, The evidence base at follow-up is limited to a small group of studies with inconsistent findings. There is a lack of evidence on the comparative effectiveness of CBT alone or in combination with other treatments, and further studies are required to inform the development of effective treatment programmes for people with CFS.

Nez M, Fernndez-Sol J, Nuez E, Fernndez-Huerta JM, Gods-Sieso T, Gomez-Gil E. "Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up." Clin Rheumatol. Epub 2011 Jan 15. PMID: 21234629

At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL. Although some studies cautiously conclude that exercise therapy is a promising treatment for CFS [14], the results of our study tend to support the somewhat controversial findings of Twisk and Maes [43] that the combination of CBT and GET is ineffective and not evidence-based and may in fact be harmful in some patients, a view supported by various surveys carried out by patient advocate groups [41].

Nijs J, Zwinnen K, Meeusen R, de Geus B, De Meirleir K. "Comparison of two exercise testing protocols in patients with chronic fatigue syndrome." J Rehabil Res Dev. 2007;44(4):553-9. PMID: 18247252

Symptoms are typically worsened after modest amounts of exercise [2], after increased daily physical activity [3], and after a maximal exercise stress test [4-5]. A delayed recovery from exercise typically occurs in patients with CFS [6].... [further discussion of findings and problems of exercise in ME/CFS and of CFS assessment]

Clapp LL, Richardson MT, Smith JF, Wang M, Clapp AJ, Pieroni RE. "Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome." Phys Ther. 1999;79(8):749-56 PMID: 10440661

Although clinical findings and self-reported symptoms vary among patients with CFS, a worsening of symptoms, especially of fatigue, after previously well-tolerated levels of exercise continues to be the hallmark of this incapacitating disorder.[25]... Patients with CFS typically feel much worse after modest amounts of physical exercise. Some investigators have suggested the onset of severe symptoms to be 6 to 48 hours following exercise[25] and to last from 2 days to 2 weeks.[2,26]... some individuals with CFS may be able to use low-level, intermittent exercise [3 min sessions] without exacerbating their [condition].

Nijs J, Almond F, De Becker P, Truijen S, Paul L. "Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial." Clin Rehabil. 2008 May;22(5):426-35. PMID: 18441039

It was shown that the use of exercise limits (limiting both the intensity and duration of exercise) prevents important health status changes following a walking exercise in people with chronic fatigue syndrome, but was unable to prevent short-term symptom increases.

Note that both of the above are time-limited trials and do not measure the effect of an ongoing program over time. Nor do they asses how adding an exercise program might affect ability to carry out important ADLs such as meal preparation. And again, this would be mild and moderate patients, not severe ones.

Black CD, McCully KK. Time course of exercise induced alterations in daily activity in chronic fatigue syndrome. Dyn Med. 2005 Oct 28;4:10. PMID: 16255779

Over the first 4-10 days of walking the subjects with CFS were able to reach the prescribed activity goals each day. After this time, walking and total activity counts decreased. Sedentary controls subjects were able to maintain their daily walking and total activity goals throughout the 4 weeks. Unlike our previous interpretation of the data, we feel this new analysis suggests that CFS patients may develop exercise intolerance as demonstrated by reduced total activity after 4-10 days. The inability to sustain target activity levels, associated with pronounced worsening of symptomology, suggests the subjects with CFS had reached their activity limit.

Bazelmans E, Bleijenberg G, Van Der Meer JW, Folgering H. "Is physical deconditioning a perpetuating factor in chronic fatigue syndrome? A controlled study on maximal exercise performance and relations with fatigue, impairment and physical activity." Psychol Med. 2001 Jan;31(1):107-14. PMID: 11200949

There were no statistically significant differences in physical fitness between CFS patients and their controls. Nine CFS patients had a better fitness than their control.... Physical deconditioning does not seem a perpetuating factor in CFS.

VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. "Postexertional malaise in women with chronic fatigue syndrome." J Womens Health (Larchmt). 2010 Feb;19(2):239-44. PMID: 20095909

The results of this study suggest that PEM is both a real and an incapacitating condition for women with CFS and that their responses to exercise are distinctively different from those of sedentary controls.

Sorensen, et al. "Complement activation in a model of chronic fatigue syndrome." J Allergy and Clin Immunol. 2003 Aug;112(2):397-403. PMID: 12897748
Activity produces immune response, which is associated with symptom flare (PEM).

De Becker P, Roeykens J, Reynders M, McGregor N, De Meirleir K. "Exercise capacity in chronic fatigue syndrome." Arch Intern Med. 2000 Nov 27;160(21):3270-7.

When compared with healthy sedentary women, female patients with CFS show a significantly decreased exercise capacity. This could affect their physical abilities to a moderate or severe extent. Reaching the age-predicted target heart rate seemed to be a limiting factor of the patients with CFS in achieving maximal effort, which could be due to autonomic disturbances.

VanNess MJ, Snell CF, Stevens SR. "Diminished Cardiopulmonary Capacity During Post-Exertional Malaise." J CFS Vol 14(2) 2007. haworthpress.com doi:10.1300/J092v14n02_07

Reduced functional capacity and post-exertional malaise following physical activity are hallmark symptoms of Chronic Fatigue Syndrome (CFS). That these symptoms are often delayed may explain the equivocal results from clinical cardiopulmonary exercise testing with CFS patients. ... For test 2 the CFS patients achieved significantly lower values for both VO2 peak and AT (anaerobic threshold). ... A second test may be necessary to document the atypical recovery response and protracted malaise unique to CFS.

Nijs J, van Eupen I, Vandecauter J, et al. "Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series." J Rehabil Res Dev. 2009;46(7):985-96. PMID: 20104421

When comparing pre- versus post-treatment data, we found that the patients' ability to perform daily activities and the severity of their symptom complexes were improved (p = 0.043). Concentration difficulties, mood swings, muscle weakness, and intolerance to bright light improved as well.... We found that 3 weeks of pacing self-management was accompanied by a modest improvement in symptom severity and daily functioning.

Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. "Illness experience, depression, and anxiety in chronic fatigue syndrome." J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870

Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P's<.01) than their counterparts.

Jason L, Benton M, Torres-Harding S, Muldowney K. "The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS." Patient Educ Couns. 2009 Nov;77(2):237-41. PMID: 19356884

Those who were able to stay within their energy envelope had significant improvements in physical functioning and fatigue severity. Health care professionals that treat patients with ME/CFS might incorporate strategies that help patients self-monitor and self-regulate energy expenditures.

So what is the patient experience like?

Asbring P, Nrvnen AL. Ideal versus reality: physicians perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Soc Sci Med. 2003 Aug;57(4):711-20. PMID: 12821018

Encountering patients with chronic fatigue syndrome (CFS) or fibromyalgia can cause dilemmas for physicians due to the uncertainty inherent in these illnesses. [as per the PC narrative] ... Different strategies are developed to handle the encounters with these patients. The results also illuminate the physician's interpretations of patients in moralising terms. Conditions given the status of illness were regarded, for example, as less serious by the physicians than those with disease status. Scepticism was expressed regarding especially CFS, but also fibromyalgia. Moreover, it is shown how the patients are characterised by the physicians as ambitious, active, illness focused, demanding and medicalising. The patient groups in question do not always gain full access to the sick-role, in part as a consequence of the conditions not being defined as diseases.

[despite abundant evidence of biomedical pathology, which unfortunately is not provided to doctors and nurses through usual channels]

Gilje AM, Sderlund A, Malterud K. "Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study." Patient Educ Couns. 2008 Oct;73(1):36-41. Epub 2008 May 16. PMID: 18486415

RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors' lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.
CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.
PRACTICE IMPLICATIONS: CFS patients' reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients' understanding of symptoms and the complex nature of the disease.

Drachler Mde L, et al. "The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review." BMC Public Health. 2009 Dec 11;9:458. Review. PMID: 20003363

The review has shown that the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development, thereby exacerbating the impact of the illness in their lives.

Larun L, Malterud K. Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies. Patient Educ Couns. 2007 Dec;69(1-3):20-8. Epub 2007 Aug 14. PMID: 17698311

RESULTS: Twenty qualitative studies on CFS experiences were identified. Symptom experiences and the responses from significant others could jeopardise the patients' senses of identity. They felt severely ill, yet blamed and dismissed. Patients' beliefs and causal attributions oppose the doctors
CONCLUSION: The identities of CFS patients are challenged when the legitimacy of their illness is questioned. This significant burden adds to a loss of previously established identity and makes the patient more vulnerable than just suffering from the symptoms. CFS patients work hard to cope with their condition by knowing more, keeping a distance to protect themselves and learning more about their limits.
PRACTICE IMPLICATIONS: Doctors can support patients' coping by supporting the strong sides of the patients instead of casting doubt upon them.

and nurses can also support the strong sides of the patients

August59 · May 10, 2012

I had to reply in some way and was as nice as I could be. Probably pushed the envelope a little bit cause I didn't have time to look up all of that stuff. I addressed their comments more on the terms of "bashing". S I definetely did not mention this forum as I do not want them over here! It felt good to get some built up anger out too!!

beaker · May 10, 2012

August59 said: ↑

I had to reply in some way and was as nice as I could be. Probably pushed the envelope a little bit cause I didn't have time to look up all of that stuff. I addressed their comments more on the terms of "bashing". Some of the people just need a good ass-whooping or just the shit slapped out of them. I definetely did not mention this forum as I do not want them over here! It felt good to get some built up anger out too!!

Thing is, I think posting back, the effect is the same as feeding trolls that would show( or have shown) up posting here.
Not sure what a board made up of troll/flamer types would be called ? Let's hope if they must be that way then keep it on their own board. It would be different if they were formally associated with a large known respected group. But they are not. They are a small b***h board.
As it is, just reading some of it, has taken more of my energy then I wish to put in that direction.

I hope everyone that has been upset by this can do something little x nice for themselves. Best to all

heapsreal · May 10, 2012

I just posted a link to cfs study showing poor nk function in cfs, to answer there original question if its a psych illness.
There a pack of bitches basically.

cheers!!!

5150 · May 10, 2012

SilverbladeTE said: ↑

What a bunch of twisted, nasty, evil, stupid, ignorant ****s!

And they even have the gall to come out with the usual "oh it's only our bar talk!", yes, I've heard "talk" like that before, usually about "negras, kikes, spics" etc by Human vermin.
Anyone who was a medical professional with any common sense and actual experience, would know that over-sensitivity to the point of pain from light/sound is a well known problem with neurological conditions, ie meningitis.

"Oh it's jsut because their mommies coddled them too much!"
OI! ASSHOLES! So in your esteemed, brillaint opinions, is that also the cause multiple sclerosis, Parkinsons or AIDS, hm?
Bunch of assholes not fit to nurse a barbie doll, go ask for a refund 'cause you turned out defective!

CIA's still recruting for medicos willing to oversee their torture sessions, go join up, you'll enjoy it I'm sure and have a right good laugh about it all, 'cause at the moment all yer good for professionally is being shit nurses in a cholera ward!

PENDEJOS! [

You took the words right out of my mouth... i was almost posting the same thought

ps - nobody tells it like you do Silverblade

IreneF · May 11, 2012

There's no point to quoting medical research to nurses. Nursing education is astonishingly shallow in that respect. They aren't trained to understand what goes on in the human body. Many of them don't even have a bachelors degree, so they are unlikely to understand a scientific paper. I'm not saying this to be mean. I always assumed RNs went to college and then got extra training, but a relative of mine, who has been working as a nurse for years, recently went back to school to get her bachelors.

This has been really chilling. I thought nurses were there to support patients, not kick them around.

Irene

heapsreal · May 11, 2012

IreneF said: ↑

There's no point to quoting medical research to nurses. Nursing education is astonishingly shallow in that respect. They aren't trained to understand what goes on in the human body. Many of them don't even have a bachelors degree, so they are unlikely to understand a scientific paper. I'm not saying this to be mean. I always assumed RNs went to college and then got extra training, but a relative of mine, who has been working as a nurse for years, recently went back to school to get her bachelors.

This has been really chilling. I thought nurses were there to support patients, not kick them around.

Irene

Lucky nurses dont make clinical decisions, they just follow the orders from doctors.
registered nurses have a degree, other nurses like enrolled nurses have a lower level of education, usually a diploma.

hixxy · May 11, 2012

heapsreal said: ↑

Lucky nurses dont make clinical decisions, they just follow the orders from doctors.
registered nurses have a degree, other nurses like enrolled nurses have a lower level of education, usually a diploma.

I used to live in share accomodation with a nurse about 6 years ago. She used to head out on the weekend. Get on the drugs, then go to work the next morning no sleep at all for her shift.

So I don't find this forum surprising at all. She was also an unstable nasty bitch too.

Thankfully they're not all like that, but a lot of them certainly do have attitude problems.

Kina · May 11, 2012

IreneF said: ↑

There's no point to quoting medical research to nurses. Nursing education is astonishingly shallow in that respect. They aren't trained to understand what goes on in the human body. Many of them don't even have a bachelors degree, so they are unlikely to understand a scientific paper. I'm not saying this to be mean. I always assumed RNs went to college and then got extra training, but a relative of mine, who has been working as a nurse for years, recently went back to school to get her bachelors.

This has been really chilling. I thought nurses were there to support patients, not kick them around.

Irene

Actually IreneF, it all depends where you get your nursing education. I had to take biochemistry, chemistry, anatomy and physiology, organic chemistry. I was trained to understand what goes on the human body. We were given an extensive knowledge of how all the body systems work.

In Canada, the requirement is that you have to get a Bachelors of Science in Nursing and this has been in place for years.

Is it a requirement that one must have a Bachelors degree in anything to understand a scientific paper? I personally don't think their level of ignorance actually has anything to do with their level of education.

Heapsreal -- nurse do make clinical decisions. Nurse Practitioners have a wide scope of practice. There are many different levels of nursing --Nursing Assistants to Nurse Practitioners and this is all country defined. Doctors often depend on the information of nurses and often make decisions based on their observations. Having a diploma does not necessarily make a bad nurse or an uneducated nurse. Many nurses learn on the job, as in any other profession. Nurses do much much more than just take orders from doctors.

I really think it's unfair to make sweeping generalizations based on the ill-informed comments made by a group of like-minded people who obviously know nothing about ME.

Sean · May 11, 2012

Thanks for those posts, WillowJ. Very helpful to have it all in one place.

As to that forum... I have not gone there, and have no intention of doing so. But it could be a good example to provide to people (especially journalists) of the poisonous vicious shit we have to put up with. Ben Goldacre's 'Bad Science' forum is probably another one.

heapsreal · May 11, 2012

Kina said: ↑

Actually IreneF, it all depends where you get your nursing education. I had to take biochemistry, chemistry, anatomy and physiology, organic chemistry. I was trained to understand what goes on the human body. We were given an extensive knowledge of how all the body systems work.

In Canada, the requirement is that you have to get a Bachelors of Science in Nursing and this has been in place for years.

Is it a requirement that one must have a Bachelors degree in anything to understand a scientific paper? I personally don't think their level of ignorance actually has anything to do with their level of education.

Heapsreal -- nurse do make clinical decisions. Nurse Practitioners have a wide scope of practice. There are many different levels of nursing --Nursing Assistants to Nurse Practitioners and this is all country defined. Doctors often depend on the information of nurses and often make decisions based on their observations. Having a diploma does not necessarily make a bad nurse or an uneducated nurse. Many nurses learn on the job, as in any other profession. Nurses do much much more than just take orders from doctors.

I really think it's unfair to make sweeping generalizations based on the ill-informed comments made by a group of like-minded people who obviously know nothing about ME.

Kina, i know, im just pressing her buttons like she is doing to us. I have deleted that site now, its pointless. Like all industries, in nursing there are some great nurses and poor nurses, most of it comes down to their caring nature. Some are great while others are trying to feed their ego i guess. I have heard from some cfs people that they actually got better care from a nurse practioner then their doctors. That group of nurses are obviously the sort you wouldnt want looking after your family. Hopefully other health care workers see the site and see how narrow minded they are. Maybe down the track if they get ill and someone has a go at them for faking or doesnt take them seriously, they might get it.

SOC · May 11, 2012

heapsreal said: ↑

Maybe down the track if they get ill and someone has a go at them for faking or doesnt take them seriously, they might get it.

Isn't nursing one of the professions at higher risk for developing ME? Now wouldn't that be ironic?

hixxy · May 11, 2012

I mustn't be a very nice person, because I've often wished ME/CFS and/or MCS on people who have treated me badly because of my illness!

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