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Responses to individual points in the P2P report

Discussion in 'Advocacy Projects' started by Sasha, Dec 28, 2014.

  1. Sean

    Sean Senior Member

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    Some notes so far, with a lot of overlap to others' comments:

    (When I say I 'Agree' with different parts of the report, I mean broadly agree, there are always details to pick them up on.)

    Lines 1-4. (Also lines 106-107.)
    COMMENT: The emphasis on ‘fatigue’ is problematic. At least four other symptoms need close consideration in defining this disease: pain, PEM, and haemodynamic and neurocognitive dysfunction.

    Line 4.
    COMMENT: There may not yet be a firmly established diagnostic test, but it is becoming clear that two stage testing to account for PEM is likely to be be at the core of reliable research tools and diagnostic tests.

    Line 6.
    COMMENT: This figure does not reflect results from several studies of the overall economic burden of ME/CFS, which indicate a minimum figure at least one order of magnitude greater.

    Lines 7-51.
    COMMENT: Agree.

    Lines 52-53 (and Lines 88-89 below).
    COMMENT: The reference to the gender imbalance in research is ambiguous and need rephrasing. Presumably it is trying to say that men have not been studied enough.

    Line 54, and 89-90.
    COMMENT: There is some data on minorities, but possibly not enough to be clear.

    Lines 55-73.
    COMMENT: Agree.

    Line 68.
    COMMENT: It is not just pharmacological psycho-therapy that is problematic and often inappropriately prescribed, but also non-pharmacological psycho-therapies as well.

    Line 70.
    COMMENT: There may be high medication costs, for at least some patients, but there is no good evidence of substantial therapeutic benefit nor broader economic value in those costs.

    Line 72-73. “All of these factors contribute to the poor quality of epidemiologic studies.”
    COMMENT: And to poor quality outcomes for patients.

    Lines 74-78.
    COMMENT: Agree.

    Lines 79-80, and 87.
    COMMENT: I respectfully suggest the bulk of education needed is for both the professional medical (clinical and research) community, and the broader general community. Patients already know their side of the basic story – the problem is inadequate research, and clinical and community support.

    Lines 80—81.
    COMMENT: Agree. Patients’ views have been basically ignored for far too long, using the unscientific and unethical excuse that we are somehow delusional about our situation, and need to be patronised, infantilised, and re-educated about the ‘reality’ of it all.

    Lines 82-86.
    COMMENT: Agree.

    Lines 88 and 90-91.
    COMMENT: Agree.

    Lines 92-106.
    COMMENT: Agree. The overwhelming focus on fatigue over the last 3 decades by the medical community, along with the generally grossly underfunded and hence underpowered research, has not been helpful in clarifying the matter. The relationship between ME and CFS and the over lapping conditions needs more attention.

    Lines 106-107. (See also lines 1-4.)
    COMMENT: Haemodynamic based symptoms also need equal attention, for both model building and clinical management.

    Lines 108-112.
    COMMENT: Agree.

    Lines 113-117.
    COMMENT: There is no methodologically robust evidence that CBT and GET offer any primary explanatory or therapeutic power. Nor, frankly, even much useful secondary palliative benefit.
     
    Last edited: Jan 1, 2015
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  2. Bob

    Bob

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    @Sean, it would really help me understand what you're commenting on if you could also quote the text that your responding to. Would you mind editing your post and adding the text? (I don't mind extracting and formatting the text if it helps you.)
     
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  3. Sean

    Sean Senior Member

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    Ah, yes, fair enough.

    Can't get back to it until Sunday, so feel free to extract and format to your heart's desire!
     
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  4. Sasha

    Sasha Fine, thank you

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    Hi Bob - all the other studies in the meta-analysis are listed as Fukuda.

    Am I missing something? Easily possible!
     
  5. Sasha

    Sasha Fine, thank you

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    I'll add an edit to directly address that nonsense. They're basically saying, 'we had these terms of reference for the meta-analysis, then we discovered that they were wrong, but we're sticking with them anyway and basing recommendations on them that will waste millions of dollars.'

    Stupid.
     
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  6. Bob

    Bob

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    Thanks Sasha. I didn't notice that.
     
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  7. Sasha

    Sasha Fine, thank you

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    Actually I think there might have been one with a weird definition I've never heard of but it was null so I didn't pay much attention - I'll check, though.

    Thanks!
     
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  8. Bob

    Bob

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    @Sean,

    Please use this or ignore it, as you wish.
    I've quoted your entire post below, and added the lines of text that you refer to from the document.
    There are four items where I'm not clear exactly what text you have referred to, and I've highlighted those sections of text in red.
    If you like, you could check through to see if my quoted passages are the ones you intended - to see if you've made any mistakes. But that's entirely up to you, of course.

    Your text starts below the line.

    --------------------------------------------------------------------------------------------------------------------------------------

    Some notes so far, with a lot of overlap to others' comments:

    (When I say I 'Agree' with different parts of the report, I mean broadly agree, there are always details to pick them up on.)

    Lines 1-4. (Also lines 106-107.)

    1 Introduction
    2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, complex, multi-
    3 faceted condition characterized by extreme fatigue and other symptoms that are not improved by
    4 rest. The etiology and pathogenesis remain unknown; there are no laboratory diagnostic tests;

    5 and there are no known cures.

    106 We noted a consistent constellation of symptoms: fatigue, post-
    107 exertional malaise, neurocognitive deficit, and pain.


    COMMENT: The emphasis on ‘fatigue’ is problematic. At least four other symptoms need close consideration in defining this disease: pain, PEM, and haemodynamic and neurocognitive dysfunction.

    Line 4.

    4 The etiology and pathogenesis remain unknown; there are no laboratory diagnostic tests;

    COMMENT: There may not yet be a firmly established diagnostic test, but it is becoming clear that two stage testing to account for PEM is likely to be be at the core of reliable research tools and diagnostic tests.

    Line 6.

    6 ME/CFS is an unmet public health need with an economic burden estimated to be greater than $1 billion.

    COMMENT: This figure does not reflect results from several studies of the overall economic burden of ME/CFS, which indicate a minimum figure at least one order of magnitude greater.

    Lines 7-51.

    7 ME/CFS results in major disability for a large proportion of the people affected. Limited
    8 knowledge and research funding creates an additional burden for patients and health care
    9 providers.


    10 Unfortunately, ME/CFS is an area where the research and medical community has frustrated its
    11 constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized.


    12 On December 9‒10, 2014, the National Institutes of Health (NIH) convened a Pathways to
    13 Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue
    14 Syndrome. Specifically, the workshop sought to clarify the following key issues:


    15 • How the research on ME/CFS, using multiple case definitions, has contributed to the
    16 state of the current scientific literature on diagnosis, pathophysiology, treatment, cure,
    17 and prevention of ME/CFS


    18 • How the measurement outcomes (tools and measures) currently used by ME/CFS
    19 researchers are able to distinguish among those patients diagnosed with ME/CFS,
    20 including the sensitivity of tools and measures to identify subsets of patients according to
    21 the duration, severity, nature, onset characteristics, and other categorizations of the illness


    22 • How the research on treatments or therapies shown to be effective in addressing
    23 symptoms of ME/CFS will lead to an understanding of the underlying pathology


    24 • How innovative research approaches have provided an understanding of the
    25 pathophysiology of ME/CFS, and how this knowledge can be applied to the development
    26 of effective and safe treatments.


    27 We critically reviewed the scientific literature and opinions presented by a group of experts and
    28 the ME/CFS community during the public meeting, weighed the evidence, and developed a set of
    29 conclusions. This report presents our findings and recommendations.


    30 What is the incidence and prevalence of myalgic encephalomyelitis/chronic fatigue
    31 syndrome (ME/CFS) and whom does it affect?


    32 ME/CFS exists. Despite the absence of a clear definition, an estimated million people have
    33 ME/CFS, and it overlaps with many other diseases (e.g., fibromyalgia, major depressive
    34 disorder, chronic pain). There is no agreement from the research community on what needs to be
    35 studied, no U.S. Food and Drug Administration (FDA)-approved drug treatments, and there are
    36 no primary prevention strategies. The lack of a universally accepted case definition for ME/CFS
    37 has led to difficulty in determining its prevalence and incidence, and has contributed to
    38 variability in the estimates reported. The Oxford criteria (published in the Journal of the Royal
    39 Society of Medicine in February 1991) are flawed and include people with other conditions,
    40 confounding the ability to interpret the science. The lack of a consistent, specific, sensitive
    41 diagnostic test and set of criteria has hampered all downstream research on pathogenesis and
    42 treatment, causing harm and preventing ME/CFS from being considered as a distinct pathologic
    43 entity.


    44 ME/CFS has a physical, psychological, social, and economic impact at the individual, family,
    45 and societal level. Patients are typically underserved, and clinicians have a poor understanding of
    46 ME/CFS. We heard throughout the workshop that ME/CFS can affect anyone. Education,
    47 financial security, and social standing will not prevent the disease.


    48 Studies of ME/CFS are fraught with methodological problems, preventing a clear understanding
    49 of who is affected by ME/CFS: there are no agreed-upon parameters for defining ME/CFS, no
    50 accurate ways of identifying and diagnosing ME/CFS, and 163 symptoms have been associated
    51 with ME/CFS.


    COMMENT: Agree.

    Lines 52-53 (and Lines 88-89 below).

    51 Small sample sizes, the inclusion of participants with differing symptoms across
    52 studies, and the lack of inclusion of the homebound, rural residents, and a research focus on men
    53 limits the applicability of current studies.

    88 Furthermore, treatments remain unproven. Clinical studies have focused on predominantly
    89 Caucasian, middle-aged women.


    COMMENT: The reference to the gender imbalance in research is ambiguous and need rephrasing. Presumably it is trying to say that men have not been studied enough.

    Line 54, and 89-90.

    53 Minorities also are rarely represented in studies, so
    54 there are no data to confirm whether minorities have a higher or lower risk.

    89 Representative, ethnically diverse samples across the lifespan
    90 are lacking.


    COMMENT: There is some data on minorities, but possibly not enough to be clear.

    Lines 55-73.

    55 All this
    56 leads to inconclusive results and a lack of knowledge of ME/CFS prevalence (i.e., how many
    57 people have ME/CFS), incidence (new cases per year), and potential causes and treatments.

    58 Fatigue has been the defining focus of recent research, but many other symptoms need to be
    59 explored, primarily neurocognitive deficit (“brain fog”), post-exertion malaise, and pain. Most
    60 ME/CFS studies focus on adults, excluding children with similar symptoms. We noted few
    61 disease-specific clinical trials; a disconnect on ways in which patients, clinicians, and researchers
    62 define meaningful outcomes; the lack of well-controlled, multifaceted studies using large,
    63 diverse samples; and the limited research dollars directed at ME/CFS from both the public and
    64 private sectors.

    65 Often, patients with ME/CFS are labeled as lazy, deconditioned, and disability-seeking; this
    66 hampers scientific progress. Both society and the medical profession often treat patients with
    67 ME/CFS with disdain, suspicion, and disrespect. Patients are frequently treated with psychiatric
    68 and other inappropriate drugs that may cause harm. Patients usually have to make extraordinary
    69 efforts, at extreme personal costs, to find a physician who will correctly diagnose and treat
    70 ME/CFS symptoms. In addition to high medication costs, the debilitating effects of ME/CFS can
    71 result in financial instability due to the physical consequences of the illness (e.g., the loss of
    72 employment, home, and other basic necessities). All of these factors contribute to the poor
    73 quality of epidemiologic studies.


    COMMENT: Agree.

    Line 68.

    67 Patients are frequently treated with psychiatric
    68 and other inappropriate drugs that may cause harm.


    COMMENT: It is not just pharmacological psycho-therapy that is problematic and often inappropriately prescribed, but also non-pharmacological psycho-therapies as well.

    Line 70.

    70 In addition to high medication costs, the debilitating effects of ME/CFS can
    71 result in financial instability due to the physical consequences of the illness (e.g., the loss of
    72 employment, home, and other basic necessities).


    COMMENT: There may be high medication costs, for at least some patients, but there is no good evidence of substantial therapeutic benefit nor broader economic value in those costs.

    Line 72-73.

    72 All of these factors contribute to the poor
    73 quality of epidemiologic studies.


    COMMENT: And to poor quality outcomes for patients.

    Lines 74-78.

    74 Given the unique challenges to ME/CFS, how can we foster innovative research to enhance
    75 the development of treatments for patients?

    76 Over the last 20 years, minimal progress has been made to improve the state of the science for
    77 patients with ME/CFS, and the public and provider community is frustrated. Patients want their
    78 concerns to be heard, a meaningful recovery (not just incremental improvement), and a cure.


    COMMENT: Agree.

    Lines 79-80, and 87.

    79 Educational efforts are needed to help patients and their health care providers better understand
    80 this disease and scientific processes. The scientific community also has a responsibility to
    81 address issues that are meaningful to patients.

    87 Overall, limited patient and professional education has impaired progress in managing ME/CFS.


    COMMENT: I respectfully suggest the bulk of education needed is for both the professional medical (clinical and research) community, and the broader general community. Patients already know their side of the basic story – the problem is inadequate research, and clinical and community support.

    Lines 80—81.

    80 The scientific community also has a responsibility to
    81 address issues that are meaningful to patients.


    COMMENT: Agree. Patients’ views have been basically ignored for far too long, using the unscientific and unethical excuse that we are somehow delusional about our situation, and need to be patronised, infantilised, and re-educated about the ‘reality’ of it all.

    Lines 82-86.

    82 There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional
    83 magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong
    84 evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling
    85 disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS,
    86 potentially important for defining and treating ME/CFS.


    COMMENT: Agree.

    Lines 88 and 90-91.

    88 Furthermore, treatments remain unproven.
    [or...]

    88 Clinical studies have focused on predominantly
    89 Caucasian, middle-aged women. Representative, ethnically diverse samples across the lifespan

    90 are lacking.
    [or...]

    88 Clinical studies have focused on predominantly
    89 Caucasian, middle-aged women. Representative, ethnically diverse samples across the lifespan
    90 are lacking. Investigations of natural history and familial linkages may identify genetic
    91 predispositions and lead to early identification and primary prevention.

    [or...]
    88 Furthermore, treatments remain unproven. Clinical studies have focused on predominantly
    89 Caucasian, middle-aged women. Representative, ethnically diverse samples across the lifespan
    90 are lacking. Investigations of natural history and familial linkages may identify genetic
    91 predispositions and lead to early identification and primary prevention.

    [and/or...]
    90 Investigations of natural history and familial linkages may identify genetic
    91 predispositions and lead to early identification and primary prevention.


    COMMENT: Agree.

    Lines 92-106.

    92 Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a
    93 psychological disease in etiology. A multitude of symptoms are associated with ME/CFS, with
    94 substantial overlap with other pathologic diseases (e.g., fibromyalgia, major depressive disorder,
    95 and a variety of chronic pain or inflammatory conditions). Focusing on fatigue alone may
    96 identify many ME/CFS cases. However, this symptom taken in isolation fails to capture the
    97 essence of this complex condition. Prior studies may have inadequately excluded individuals
    98 with the distinct diseases listed above, leading to delayed diagnosis, conflicting diagnoses,
    99 contradictory treatments, suboptimal care, and inappropriate health care utilization. Future
    100 studies should distinguish between ME/CFS alone, ME/CFS with comorbidities, and other
    101 diseases to better define cellular and molecular mechanisms for targeted treatments.
    102 Carefully designed and adequately powered studies defining the spectrum of ME/CFS in urban
    103 and rural communities are lacking, limiting their applicability to an increasingly diverse society.
    104 Specifically, it is critical to include patients with limited access to clinical services (e.g., non-
    105 ambulatory patients). A clear case definition with validated diagnostic tools is required before
    106 studies can be conducted. We noted a consistent constellation of symptoms: fatigue, post-

    107 exertional malaise, neurocognitive deficit, and pain.

    COMMENT: Agree. The overwhelming focus on fatigue over the last 3 decades by the medical community, along with the generally grossly underfunded and hence underpowered research, has not been helpful in clarifying the matter. The relationship between ME and CFS and the over lapping conditions needs more attention.

    Lines 106-107. (See also lines 1-4.)

    1 Introduction
    2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, complex, multi-
    3 faceted condition characterized by extreme fatigue and other symptoms that are not improved by
    4 rest. The etiology and pathogenesis remain unknown; there are no laboratory diagnostic tests;

    5 and there are no known cures.

    106 We noted a consistent constellation of symptoms: fatigue, post-
    107 exertional malaise, neurocognitive deficit, and pain.


    COMMENT: Haemodynamic based symptoms also need equal attention, for both model building and clinical management.

    Lines 108-112.

    108 Patients with ME/CFS are hopeful that research will lead to a cure. However, the few cross-
    109 sectional studies with limited applicability have provided few insights to the disease or its
    110 treatment. Clinical trials require large investments of time and energy, and may be associated
    111 with other harms (e.g., increased symptoms, medication toxicity). Future studies must be
    112 collaborative, multicenter efforts and must include large, diverse samples across the lifespan.


    COMMENT: Agree.

    Lines 113-117.

    113 Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy
    114 [GET]) demonstrate measurable improvement, but this has not translated to improvements in
    115 quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a
    116 component of multimodal therapy. Overall, agreeing on a case definition and clarifying
    117 comorbidities could launch bench-to-bedside science.


    COMMENT: There is no methodologically robust evidence that CBT and GET offer any primary explanatory or therapeutic power. Nor, frankly, even much useful secondary palliative benefit.
     
    Last edited: Jan 2, 2015
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  9. Sean

    Sean Senior Member

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    Thanks, Bob. :)

    Get back to you tomorrow.
     
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  10. Sasha

    Sasha Fine, thank you

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    Criticism #6

    Further research into psychological aspects of, and treatments for ME/CFS should not be conducted, and psychological therapies should not be recommended as a standard part of treatment


    (Lines 92-93) Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.

    (Lines 113-116) Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy.

    (Lines 282-284) Studies addressing biopsychosocial parameters (including the mind-body connection), function, and QOL should be encouraged.

    (Lines 362-364) The modest benefit from CBT should be studied as adjunct to other modalities of treatment such as self-management. Future treatment studies should evaluate multimodal therapies.

    (Lines 384-385) We believe there is a specific role for multimodal therapy.​

    The report (lines 92-93) acknowledges that ME/CFS does not have a psychological etiology. However, the report recommends ‘multimodal therapies’ with CBT as a component (lines 113-116, 362-364, and 384-385), and that studies addressing biopsychosocial parameters and function, the mind-body connection, biopsychosocial function, and QOL should be encouraged (lines 282-284).

    Enormous damage has been done to patients by treating their organic disease as though it is due to false illness beliefs and an irrational fear of exercise. CBT has been used to deliver ‘treatment’ designed to rid us of these supposed beliefs and irrational fears.

    There is nothing wrong, psychologically, with patients with ME/CFS that is not part of having a chronic disease. If patients are struggling psychologically to cope to adjust to the distress of disease, then once all necessary practical and financial support has been given to help them, they should be offered psychological support to help them to cope. If they are depressed, they should be offered treatment for their depression. If neither is the case, they should be left alone.

    There is no need to waste yet more taxpayers money studying ME/CFS as a special psychological case when it isn’t one, or imposing psychological treatments on patients who neither want nor need them.

    The overriding need is for biomedical research into the disease. This wish to do ME/CFS-specific psychological research is a hangover from the false illness belief model and should be rejected.
     
    Last edited: Jan 4, 2015
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  11. Bob

    Bob

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    I like what you've done here Sasha. A couple of suggestions that you can ignore if you wish...
    Some people have recently pointed out that what we actually need, when struggling to cope, is financial and practical support, not CBT. So perhaps you could leave out the word 'psychological' where i've highlighted it above? And perhaps even replace it with "financial, practical and social" or something similar? But perhaps that misses the point that you are making. So, like i said, please feel free to ignore me.

    This last sentence doesn't make sense to me. Did you miss a word out where i've made a suggestion in red text?
     
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  12. Sasha

    Sasha Fine, thank you

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    Criticism #7

    Recommendations for treatment teams should focus on the role of specialist physicians, not psychologists and others

    (Lines 313-315) We believe ME/CFS is a distinct disease that requires a multidisciplinary care team (e.g., physicians, nurses, case managers, social workers, psychologists) to optimize care.​

    While there is a place for multidisciplinary care, the report should make clear that the key role in ME/CFS care should be played by a multidisciplinary team of medical specialists including neurologists, cardiologists, immunologists, infectious disease specialists and specialists in orthostatic intolerance. The disease is a multisystem disease and requires input from a range of medical specialities.

    Not all cases will require nurses, case managers, social workers and psychologists: by no means all ME/CFS patients are in psychological distress, for example.
     
    Last edited: Jan 4, 2015
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  13. Sasha

    Sasha Fine, thank you

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    Thanks, Bob - I've clarified:

    There is nothing wrong, psychologically, with patients with ME/CFS that is not part of having a chronic disease. If patients are struggling psychologically to cope to adjust to the distress of disease, then once all necessary practical and financial support has been given to help them, they should be offered psychological support to help them to cope. If they are depressed, they should be offered treatment for their depression. If neither is the case, they should be left alone.​

    I sure did... :oops:

    Thanks, Bob!
     
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  14. Kati

    Kati Patient in training

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    If you look at the list of funded illness and conditions by rank on the NI H website, you will notice that mind-body connection research ranks very high on the list, perhaps suggesting that the power of the psych lobby is alive and well, unfortunately.
     
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  15. Sasha

    Sasha Fine, thank you

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    How embarrassing!

    Actually, don't worry about the thread being tidy any more - I'm now hyperlinking to the key posts from the list of points in the second post on the thread.
     
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  16. Sasha

    Sasha Fine, thank you

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    All the more reason to give that point a stiff kicking! :)
     
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  17. Sing

    Sing Senior Member

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    I feel it is important to jump on that word "fatigue" right away, in line 3 and line 106. I will say that it is a specific type of fatigue, PEM or PENE, as shown by the 2-day exercise testing done in a study by Alan and Kathy Light and currently used to help establish disability. I think I will also comment that calling this condition CFS is like calling anything with pain "Chronic Pain Syndrome". However, using "fatigue" is even more unhelpful given it is the most common symptom found across all known illnesses.

    I thank you hard working posters very much for helping us towards useful critiques of this draft report!
     
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  18. Sasha

    Sasha Fine, thank you

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    Thanks, @Sing!

    I'm by no means going to be able to get across all of the points that people are raising - I'm near my limit on what I can do - but I'm glad you and I'm sure others will be tackling the 'fatigue' issue! You're right, it's an important one.

    :thumbsup:
     
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  19. Sasha

    Sasha Fine, thank you

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    Criticism #5

    References to patients’ ‘fear’ should be removed from the report

    (Lines 65-66) Often, patients with ME/CFS are labeled as lazy, deconditioned, and disability-seeking; this hampers scientific progress.

    (Lines 82-86) There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS, potentially important for defining and treating ME/CFS.

    (Lines 92-93) Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.

    (Lines 134-138) The focus on exercise programs has further stigmatized and discouraged research participation. In many cases, lack of instructions or guidance for including graded exercise therapy often causes additional suffering, creating fear of harm from a comprehensive self-management program that may include some physical activity (e.g., mild stretching).

    (Lines 297-298) Although ME/CFS is not a psychiatric disease, exploring psychiatric comorbidities such as depression, anxiety, and fear is critical to improve quality of life.​

    The report acknowledges that labelling patients with ME/CFS as deconditioned has hampered scientific progress, that there is reproducible evidence of organic pathology and that ME/CFS is not a psychological disease.

    Nevertheless, the report twice mentions patients’ ‘fear’ (lines 134-138 and 297-298).

    Some psychiatrists have pushed the idea that ME/CFS consists of deconditioning and that patients hold an irrational fear of exercise, which prevents them from reconditioning. There is no evidence to support this ‘kinesophobia’ theory and a great deal against it.

    To suggest that patients hold such irrational fears and that they require exploring has no basis in evidence. These statements should be removed from the report.
     
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  20. Sasha

    Sasha Fine, thank you

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