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Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

Discussion in 'General ME/CFS News' started by Cheshire, Mar 5, 2019.

  1. duncan

    duncan Senior Member (Voting Rights)

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    I just received a letter Baraniuk is sending around voicing what appears to be his dissatisfaction with the SEID/CFS "amalgamation" and its import to GWI, and an apparent VA proposal to replace CFS in GWI patients with SEID/CFS .

    I am unclear what he is concerned about other than (I think) SEID/CFS appears to be a combination of the 2015 IOM entity with the 1994 Fukuda criteria. The amalgamation has not been validated in VA patients, the amalgamation is not evidenced-based, and he is concerned with the VA's role in its implementation.

    I think he is displeased SEID/CFS may supplant CFS in VA GWI patients in what he characterizes as a retrogressive and arbitrary move, should it be allowed to happen.
     
    Last edited: Mar 7, 2019
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Some examples of what he said can be read here:
    A Selection of points the Barts CF Service made during the NICE Guidelines for CFS / ME: Tom Kindlon
    https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/
     
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  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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  4. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Related threads:

    A Proposed Rule by the Veterans Affairs Department on 02/05/2019 (US format - UK format 05/02/2019)


    https://www.s4me.info/threads/a-pro...-05-2019-us-format-uk-format-05-02-2019.8056/


    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID


    https://s4me.info/threads/usa-nchs-cdc-proposal-for-icd-10-cm-adding-seid.5929/
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    It is one of the most reported symptoms. People who literally do not know what a disease is about cannot be considered competent, let alone experts. These people are completely out of their depth here, they're interested in creating reality, not understanding it.

    I read the cited comments. They are literally all wrong. All of it. They know nothing of this disease, insisting that their imagined perception is more reliable than what patients experience, disputing the very existence of common symptoms. It's really astounding incompetence. They reject reality and substitute their own.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    And the thing about this is that this was a service set up to serve people with ME/CFS. They were supposed to be helping the patients.

    Before there was an embargo on discussions about the Chief Medical Officer's working group in the UK a few years earlier, I heard that Peter White was similarly making some quite outrageous redrafts along these lines.

    A lot of people complain about Simon Wessely but in the 2000s, I think Peter White was more important. He was also close to Bill Reeves in the CDC; the CDC, according to their draft 5 year plan that came out in around 2009, were even planning to run trials are graded exercise therapy, CBT and the like. Things have improved so much in the CDC since then.
     
    Last edited: Mar 8, 2019
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  7. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    Those responses make my blood boil and clearly show whites “unhelpful beliefs”. His query along the line “why should a person with concentration difficulties find listening over reading easier ... Could not the patient just do simple graded reading” is another nugget of sheer blind stupidity. I personally find for factual information reading better but This ties in nicely with a current discussion on ME Association Facebook about reading. Most people who’ve replied state severe difficulties with reading books etc and many state a preference for audiobooks. Peter white has a massive plank of prejudice in his brain causing serious perception issues and he clearly goes beyond concerns about maintaining function as much as possible for welfare regarding wheelchairs due to his fanaticism about CFS, plus in ME the primary concern should be to reduce over exertions which is not even on PWs radar. It’s just scary how much influence he’s had when he, due to his illness model, is driven by his own beliefs and deaf to the patient experience and when he says moderate disability should never get a wheelchair...

    I thought that this comment was ironic given the PACE trial outcomes
    “SH St Bartholomew’s Hospital Chronic Fatigue Services 75 FULL 188 6.3.6.16
    These goals should include recovery, not just exercise and activity goals. If it takes “years” to achieve goals, then either the goals are wrong or the therapy is wrong. What other treatment in medicine would take years to work? We suggest “or even years” is deleted. If a therapy is not helping within a few months, either the therapy or the diagnosis or both should be reviewed and changes considered. We suggest that this advice is pertinent to all treatment approaches, not just for GET.”
     
    Last edited: Mar 7, 2019
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  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Esther12

    Good point about informed consent. And, I would emphasize thoroughly informed consent.

    Anyone ever notice you aren't readily advised of the downsides of a procedure?

    For example, length of time to heal from a surgical procedure - anyone told a more
    optimistic number, then with follow up told it usually takes a fair bit longer for most people?

    Paternalistic? Not wanting to scare patients off? Trying to reassure, or downplay the ramifications of some treatment

    Thanks to the Internet there are good sites which can inform when medical pros don't. But, sometimes more complex issues just can't be covered on websites.

    The paternalistic attitude used to exclude
    patients' access to their medical files, at least in my country. Patients never used to have a right to copies of tests, letters etc.

    I think you're right about physicians not seeing the problems with GET and CBT for ME. They would just view it as another
    colleague correctly and ethically administering a curative treatment.

    This comradeship is fostered in med schools which helps develop future good working relationships. However, patients as Other, don't have much hope of having legitimate complaints heard.
     
  9. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Yes, I thought the claim about recovery was interesting. He couldn't, for example, claim that there wasn't enough time in the PACE Trial to obtain recovery given what he wrote there.

    I decided to draw attention to the comment in my 2011 paper

    https://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
     
    Last edited: Mar 7, 2019
  10. Diane O'Leary

    Diane O'Leary Established Member (Voting Rights)

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  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Cruel, utterly cruel.
     
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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Seems like following their own advice is not a strong suit. I believe this is called non-compliance? Or is it pervasive refusal (to follow one's own advice) syndrome?
     
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  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Simone As per NICE comments above about recovery being rare, wonder where they found those stats.

    Comments from Barts shows absolutely appalling lack of knowledge, just for a start.
     
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  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think it might be even simpler than that. Presenting an optimistic 'everything's gonna be alright' people IMO will have fewer questions and therefore the MD can avoid answering things and move on quicker saving time and bother.

    By presenting the best outcome they are not lying,they're just not telling the whole truth. So that's OK then. <sarcasm>
     
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  15. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Snowdrop, good point.

    Worst case scenarios would logically create more questions, and use up more time.

    I had the odd experience of asking what I thought was a logical question about a health issue that had a good chance of being life threatening. When I asked if the problem was potentially life threatening, the answer was something to the effect of "You do ask difficult questions." So.... the rule seems to be, even if there's a good chance you will die from something being investigated, don't ask if you might die from it.
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    One could say that though, given that Peter White would probably have seen over 1000 patients over 15-20 years before this, published numerous papers and followed the literature, I think his comments are more driven by ideology.
     
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  17. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Yes, ideology.

    And, because ideology not biomedical science has guided treatment of ME, perhaps this is another reason to replicate studies on basic issues about ME: OI, PEM, immune dysfunction, etc.

    Although for many pwME, including myself, this feels like it may be a waste of time because the IOM/NAM has reviewed some 9000
    papers, and found sufficient evidence for the above noted issues. When is there enough evidence for those with open minds? I doubt there will ever be enough biomedical proof for the PS group.
     
  18. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Aside from "recovery/improvement stats" for the PACE trial, and others of the same ilk, plus "cfs" clinic stats for "success", are UK government departments tallying return to work/school for pwME after GET/CBT treatment?

    What about other countries that support or supported the GET/CBT theory for ME? Where are the US, and Canadian stats? The European numbers? How about Australia? Africa?

    Can health departments and ministries easily point to the number of successes from these treatment? If there are numbers available, are these organizations able to prove real success? Are these pwME back at work or school, and leading normal lives?

    If GET and CBT are supposedly so successful, where are these large numbers? Where are these countries' reports? Where are the reports from physicians and other health professionals that these "therapies" help pwME get their old lives back? By now, shouldn't pwME numbers "benefiting" from GET/CBT be in the thousands to millions world-wide? Where is the solid information on this? Not anecdotal, methodologically flawed, ideologically driven numbers.

    Where are the real stats on these two "therapies" for pwME - the hard facts?

    And, how are governments keeping track of adverse reactions from GET/CBT for pwME, and others? How do they do this for pharmaceuticals and other medical treatments? The short answer for other medical treatments is sometimes they don't.

    Can governments readily point to the thousands of pwME in their countries who have returned to health and normal lives after GET/CBT? Where are governments' stats to back up the claims GET/CBT cure or improve significant numbers? Where is the follow up, monitoring, and governments' responsibilities?

    Is the short answer, there is none?
     
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  19. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Apologies for slow reply. And apologies if what I write has been said by others. I didn't have the capacity to respond as quickly I would have liked, or to read all the comments which have appeared since, but I wanted to respond because I think this is a really important issue.

    I don’t think we are disagreeing about much. I agree that for pwME the most pressing concern is to discredit the ineffective and potentially harmful therapies, and the flawed research methodologies upon which they are based, and I agree that those arguments are separate from and should not be confused with arguments about aetiology. However, I also think that, separately, there are legitimate ethical concerns about somatisation-type diagnoses.

    First, I think it's important to differentiate between prescribed treatments and how patients are treated in the more general sense of how people interact with them. I believe it can be harmful to falsely label someone as mentally unwell, independently of what treatments they are prescribed.

    If someone is mentally unwell it may be appropriate for medical professionals and others to interact with them in ways that would be inappropriate with someone who is not mentally unwell. (NB I am not talking about inappropriate interaction due to prejudice.) In the case of ME/CFS, doctors and others are informed that it is patients’ unhelpful beliefs which are preventing them from recovering. Independently of what treatments they may be prescribed, this results in medical professionals and others treating (ie interacting with) pwME in ways that are inappropriate and distressing (ie harmful). However, this situation is not unique to ME/CFS or mental health. It would be similarly unethical, for example, to falsely assert that someone had any other type of diagnosis, such as a highly infectious disease – and more so if everybody who had a chronic illness without a known biomarker was automatically assumed to a have such a disease.

    Second, I think we need to differentiate between speculation about the possible causes/mechanisms of a medical condition, and stating as facts theories or models which are not supported by reliable evidence (and in some cases may be unfalsifiable). I have no ethical concerns with responsible doctors or scientists speculating about what role psychological factors might play in triggering, maintaining or effecting any type of illness. But, to me, an ethical line is crossed when speculation is assumed to be fact without reliable supporting evidence – especially when those assumptions inform public policy.

    Again, this ethical line applies to non-psychological diagnoses in the same way that it applies to psychosomatic-type diagnoses. So in that sense I agree that it is unhelpful to differentiate ethically between psychosomatic v biomedical. The ethical problem is with the false diagnosis/mislabeling and the presentation of speculation (or falsehoods) as facts, not about the particular type of diagnosis. The point is that the psychological medicine should be held to the same standards as any other branch of medicine.

    However, I also think it’s important to recognise that, unlike other branches of medicine, psychological medicine has a long history of crossing these ethical lines – particularly with regard to somatisation-type diagnoses. It seems that for more than 2000 years just about every unexplained chronic illness has been assumed to be some sort of somatisation until the real causes and mechanisms have been understood. With such an appalling track record, I struggle to understand how such a diagnosis can continue to be taken seriously as a scientific explanation for anything. Yes, we can, and must, defeat the particular claims made by BPS researchers about the effectiveness of particular treatments and the causes of particular illnesses, but at some point the route cause to these repeated false claims needs to be addressed. I agree that successfully challenging flawed methodology in psychological research will go long way to achieving this, but I don't think that should be the only approach.

    I also think it is important not to overlook the particular consequences of falsely labelling someone as being mentally unwell – particularly when the patient is considered to be deluded in some way, and/or responsible for perpetuating their own illness – which may be different from the consequences of other types of false diagnosis/characterisation.

    However, as evidenced by the discussions on this thread, arguments about the ethics of somatisation-type diagnoses are harder to make than arguments about the quality of BPS ME/CFS research and the effectiveness of particular treatments, and there is a danger that if they are not presented carefully they may distract from or undermine the immediate battles which need to be fought with NICE, Cochrane and others.
     
    Last edited: Mar 11, 2019
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  20. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Don’t hold your breath. Expect complaints to your University, ad hominem attacks and the destruction of strawman arguments, but not public debate.

    Also, do not underestimate SW. He may have many faults but he is no fool. If there are weaknesses in your arguments he will exploit them with ruthless efficiency, and use them to discredit you and others.

    I’m sure you will understand if we of all people are not persuaded by arguments based on the fact that they have been peer-reviewed and published in high-ranking journals. In my experience discussions on these forums are often far more in depth and useful than peer-review – remember this is where many of the peer-reviewed critisisms of PACE and other flawed research have been formulated.

    I don’t think anyone perceives you as anything other than an ally. But first and foremost we are allies in pursuit of truth, wherever that may lead us.

    Many thanks for writing the blog and instigating this discussion – I’ve found it very interesting and informative.
     
    Last edited: Mar 10, 2019
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