Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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"No, It Isn't All in Your Head" by Steve Lubet, law professor at Northwestern Uni.

Discussion in 'General ME/CFS News' started by Tom Kindlon, Oct 27, 2015.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    Alternative link while the first link is down:
    https://listserv.nodak.edu/cgi-bin/...CO-CURE&P=R1100&I=-3&d=No Match;Match;Matches
     
    Last edited: Oct 27, 2015
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  2. Tom Kindlon

    Tom Kindlon Senior Member

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  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    A tad jingoistic maybe? Enlightenment has dawned enough for some of Tuller's citations to be from a retired English immunologist (half Welsh to be precise). And we have research programmes looking at immunology and muscle physiology and a Biobank ready to get into gear, thanks to some very enlightened charities. I am not disagreeing though. From the patients' perspective the clinical side has been slow - but even that might be changing. I actually think that collaborative biomedical research is moving at least as fast as in the US, but then I would.
     
  4. user9876

    user9876 Senior Member

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    It also misses the work going on in Norway, Germany, Australia, Japan and I'm sure other countries as well. But it would be good if the US ramped up research.
     
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  5. Tom Kindlon

    Tom Kindlon Senior Member

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    I hope people read the full piece before being too harsh.
     
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  6. Sasha

    Sasha Fine, thank you

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    I don't think he's being jingoistic - and when he says, "medical research has been sidelined while psychiatrists continue to insist that ME/CFS is best addressed by Cognitive Behavior Therapy and an increase in activity known as Graded Exercise Therapy", he's describing patients' everyday lived experience in the NHS. The medical research (on the scale and of the quality that we need) is in its very early days and hasn't yet fed through into clinical practice, even though I agree with what you say about what's happening now and how good and promising that is.
     
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  7. sarah darwins

    sarah darwins I told you I was ill

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    Absolutely. I think it's a good 'lay' summary of the state of play. If it overlooks the good things that are being done in the UK, that's perhaps because those things are getting so little attention in either the mainstream or medical press, and because nowhere does the psychosomatic lobby seem to have as much influence as here.

    It may be a bit unfair on the likes of Jonathan (okay, it is a bit unfair!) but as far as public policy towards the illness is concerned it's probably a pretty accurate representation of where we are. And it should be thoroughly embarrassing to policy makers, not to mention the editorial staff of The Lancet.

    Re people reading the article, Tom, it's in a very small typeface (got to love that a law faculty has its entire website in small print!). Is it okay to copy the whole article into a text file with a large font, for those who have trouble with dense copy, and make it available for download here? Anyone know?
     
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  8. Sasha

    Sasha Fine, thank you

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    I always feel uncomfortable doing that - not sure of the guidelines. If there's a long piece on the internet that I want to read, I tend to copy and paste it into Notepad (which strips out all the formatting) and from there into Word and then print it out in 12pt Roman.
     
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  9. sarah darwins

    sarah darwins I told you I was ill

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    Yes. On reflection, probably shouldn't undermine the copyright of an American faculty of law :nervous::rolleyes:
     
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  10. user9876

    user9876 Senior Member

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    On a windows computer you can do <ctrl> + to zoom in the screen and <ctrl> - to zoom out.
     
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  11. user9876

    user9876 Senior Member

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    Yes I was being a bit harsh as I thought it was a good article.
     
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  12. Esther12

    Esther12 Senior Member

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    Any short summary is going to miss out some details, but I reckon the UK deserves a bit of a kicking tbh.
     
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  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Esther, your wish is my command. One based on history and a continuation of history that (via PACE) we see was blueprinted by medical quackery. (Patients alleged to 'think' themselves better to reduce symptoms as symptoms 'persist' the condition, not disease).

    Firstly, any hope that the UK research collaborative is a 'biomedical ME' research programme is incorrect and patients hopes will be dashed if they don't see the obvious. What the UK 'collaborative' actually is, is a blend of biomedical chronic fatigue research (not ME as no neurological signs are required for 'CFS/ME') and psychiatric chronic fatigue states. To discover the 'cause' of ME, it is totally inadequate to have a 50% research basis for organic ME CFS + 50% against it and simultaneously promote this as truly 'biomedical' with the usual boating hyperbole we're so used to 'the very best', 'superb' ' brilliant' 'incredible'. (For example we don't have a group called the Women's equal pay initiative where 50% of advocates say women should get paid the same as men, and 50% say no. That's not a collaborative, it's a separation). Perhaps the UK CFS fatigue separation group would have been more an adequate title.

    Tuller and now this 'isn't all in your head' supportive article states what we all knew anyway, but the Wessely school isn't over as some think, it remains in place just with a new label and some biomedical fatigue thrown in. Conversely to the British MRC, the IOM in America rejects CBT as a therapy to reverse symptoms. Thus, the UK is nowhere near the American level of science, as some believe.

    An odd finding with MRC's Dr Holgate conveniently absent from AFME, ME Assoc and colleagues enthusiasm:

    Dr Holgate invited Wessely to select researchers for the research collaborative* The names of which were then redacted. :rolleyes:;) Wessely, like Crawley also believes ME does not exist,as is not an organic disease process.
    *This information was made public by an FOIA request.

    As extreme ME can be fatal, and as CBT GET is fraud (when sold as a treatment for 'ME') there is no accuracy that UK research is indeed in-line with the Americans or more advanced. For example, Americans (looking at severe CFS) at Stanford medical school discover massive cytokine inflammation ''highly highly elevated'' (Dr Montoya in his talk to the UK research collaborative recently). Unlike the British, Dr Montoya also reports, over the years, that CFS patients die from Cancer. American, Dr Peterson also has shared that 'CFS' can kill patients from rare mantle cell Lymphomas at rates far higher than in the average population.

    The Wessely School mindset was, thankfully,absent from the American IOM (which Dr Holgate says he wants to replicate in the UK - a sensible idea), however the Wessely School mindset is part of the Research Collaborative. :bang-head:
    So no, the UK research collaborative are no where near the level of the Americans, due to it being infiltrated by the Wessely School mindset. Crawley's ideas are actually those of of White, Chalder and Wessely. This is fine for psychosomatic functional disorders, but likely dangerous for organic disease CFS states and ME

    Reversing from the quackery:

    The MRC chose to not fund biomedical research for years, 'coming together' now (with ME denial experts and biomedical fatigue research) to pretend this is all fine and dandy, but when patients are deceased (due to no biomedical research) this won't wash if you know the history of medico-politics in the UK. Older severe ME patients, still alive, some now have sensory and autonomic neuropathies (nerve damage), some with kidney and liver problems, diabetes, heart problems, and even lung damage (COPD). These are most unusual chance findings in people who have 'belief' in disease and who have 'no evidence of ongoing disease'. That is true, but at year 0. How about researching year 25?

    Away from the CDC, wise Americans can see the writing on the wall with CFS as a concept. There are now a few independent research facilities (Simmaron, OMF are leading the field) formed. The British, haven't even got any independent researcher facilities like these.

    http://simmaronresearch.com/
    http://www.openmedicinefoundation.org/
    http://www.wpinstitute.org/

    In fact it was an ME charity (Invest in ME) who helped get the funding for the UK Rituximab trial, bizarrely mostly funded by patients and their supporters as the UK health agencies refused to fund it, but curiously, the MRC did fund PACE. What a clever and memorable move.

    I'm afraid all of this tragedy is a sign that socialism cannot possibly compete with capitalism when it comes to science freedoms. Malignant socialism is the lesson here of PACE and the MRC gaining ground and the NHS all fusing together to decide on their idiotic decision to declare 'CFS/ME' as ME and patients symptoms based on 'beliefs'. Still funded!!!

    Indeed, it was cost effective to initially blame the infected patients and deny biomedical research funding. (Through disease denial the patients remain 'mentally ill' as no science helps to solve the cause of the disease). It was simple, it was easy and still is. No one can argue with this as a premise for management, psychotic and deranged perhaps when dealing with people's health and lives, but certainly a plan that's easy to implement.

    Post PACE:

    The British will simply move the goal posts from psychosomatic to biomedical 'fatigue'.
    ME sufferers don't complain of fatigue as their primary complaint.
    Severely affected (never researched) multi decade neglected ME sufferers, can develop:

    Neuropathic pain (shooting nerve pain from peripheral neuropathy, trigeminal neuralgia etc).
    Muscle weakness worsened by movement.
    Muscle fasiculations (CNS sign).
    Weak breathing muscles including paroxsymal hypoxia.
    Vertigo, dizziness from upright posture, standing, walking and CHRONIC REPEAT INFECTIONS.
    Associated Nystagmus (CNS sign).
    Sluggish pupil response to light changes (CNS sign).
    Potentially FATAL Cardiac arrythmias (SVT, VT, AF) and vasospasm angina (severe crushing chest pain).

    Loss of IQ.
    IgG subset deficiencies (immune supression).
    Mold/Myotoxin infections (sign of immune supression).

    Confusion (Try driving a car, or leaving a gas cooker on when confused).
    Low Blood volume (greatly restricts movement).
    Destructive Arthritis, Ostoporosis (risk of fracture, painful, impairs movement).

    Life threatening Allergies, Asthma, Diabetes, Hypertension, Hypotension, Hypertensive Crisis (fatal if untreated).
    Paralysis, bowel and bladder incotenance.
    Gut motility damage requiring TPN


    HOW MANY OF THE ABOVE (SIGNS OF NEURO DISEASE), ARE BEING RESEARCHED BY THE UK RESEARCH COLLABORATIVE? (Psych Fatigue + Biomedical Fatigue research).

    The British MRC (state) funded collaborative are NOT equal to Americans EXPERTISE of independent biomedical CFS research, they are in retreat, waving biomedical flags hoping we never noticed what happened.

    Except as Dave Tuller's article and Steve Lubet's now discuss, we did notice and being the rodent (prey) hunted by the psych lobby (attacker) isn't nice. PACE is the definitive medical finger print that provides forensic evidence you can't make a theory of a disease policy, and get it wrong.

    The health agencies got it wrong, badly, and 46 years later a few bored people just woke up to the idea.

    A 20 year old young woman who developed severe ME in 1969 is now 66 years old, if alive, with no treatment modality in sight. This means they never had an adult life, because of the views of other people as a movement of people (minority).

    Who last did that to a minority, involving millions of people? It wasn't cats.
     

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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I agree that he was probably mostly talking about public policy. NICE guidelines remain firmly committed to CBT/GET, while even our CDC (our worst offender in terms of spreading disinformation) has listed its Toolkit (which promotes the CBT/GET approach) as archived, and linked to the IOM report which is much more up to date. More work needs to be done and CDC are dragging their feet, but they have taken the first steps.

    Also we had sidelined our worst government-affiliated offenders, in terms of publishing disinformation, which has yet to happen in the UK. They are still invited to the Collaborative. Happily you said no one listened to them, but I would be better pleased for them to go away and do something which has nothing to do with patients or research of any kind. That way they can't talk to any gullible reporters, either.

    That being said, I'm very happy that there is potentially useful research ongoing in England, Scotland, Norway, Japan, Australia, and so on. And I thank you personally, JE, for your part in encouraging and participating in it.
     
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  15. medfeb

    medfeb Senior Member

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    In addition to the archived Toolkit, CDC's current "Diagnosis and Management" CME also recommends CBT and GET, using PACE as a reference. There are also a number of other U.S. medical education providers that recommend CBT and GET. One of them is UpToDate, updated in July of 2015, which bases its recommendation on both PACE and the 2015 AHRQ evidence review, which ranked PACE as a good study.
     
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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    True. This still needs fixed. Urgently.

    They are dragging their feet and they need to go, go, go.
     
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