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Medical forum making fun of ME/CFS patients

Discussion in 'Action Alerts and Advocacy' started by Rrrr, May 10, 2012.

  1. Esther12

    Esther12 Senior Member

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    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.

    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.
     
    peggy-sue likes this.
  2. SOC

    SOC Senior Member

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    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.

    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 ;))

    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.
     
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  3. madietodd

    madietodd Senior Member

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

    SOC Senior Member

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    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. :rolleyes:
     
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  5. WillowJ

    WillowJ Senior Member

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    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
    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
    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
    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
    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

    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
    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
    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
    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
    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
    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
    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.
    (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.
    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
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    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.
     
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  7. Esther12

    Esther12 Senior Member

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    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).
     
  8. WillowJ

    WillowJ Senior Member

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    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.
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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
    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.
    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
    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
    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
    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
    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
    [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
    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
    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
    and nurses can also support the strong sides of the patients :thumbsup:
     
  9. August59

    August59 Daughters High School Graduation

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    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!!
     
  10. beaker

    beaker CFS/ME 1986

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    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
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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!!!
     
  12. 5150

    5150 Senior Member

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  13. IreneF

    IreneF Senior Member

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    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
     
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
     
  15. hixxy

    hixxy Woof woof

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    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.
     
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  16. Kina

    Kina Moderation Team Lead

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    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.
     
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  17. Sean

    Sean Senior Member

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    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.
     
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  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    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.
     
  19. SOC

    SOC Senior Member

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

    hixxy Woof woof

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    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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