1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

Death Contract? ME/CFS Experts and Advocates Unite to Oppose US 'Case Definition' Contract

Discussion in 'Phoenix Rising Articles' started by Mark, Nov 1, 2013.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    The latest GWI report from IoM from January 2013 apparently does take a shot at redefining GWI, though it is supposed to be on treatments. Vernon wasn't on that panel. The report did say all that bad stuff you quoted, of course.

    Vernon is on the current GWI/CMI IoM redefinition panel along with Fred Friedberg. If they sell our veterans down the river, my disgust will be greater than ever for these two.
    peggy-sue likes this.
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,940
    Likes:
    4,913
    Sth Australia
    Wow.. what a great article. A big thanks to Mark and Nielk for it.

    A Death contract is how I personally see it. Non experts or a biased panel would only water this illness down more and make it harder for the more severe ME group. Why do this when there is the Canadian defination and they should be accepting that (and then when more is known about this illness and accepted, move logically forward on from that).

    They put only pennies into funding ME/CFS, not willing to fund it as they do other serious conditions while on the other hand go and approve expensive contract such as this which is going to be more harmful then good.

    I cant imagine those who are naive about ME/CFS (the non experts who will be on the panel) reading all Tom Kindons writings (hope i have the name right) on why the PACE trail was a very bad trial to understand the problems with a lot of the biased research going on out there.
  3. Sean

    Sean Senior Member

    Messages:
    1,214
    Likes:
    1,961
    Kindlon
  4. Hermes

    Hermes

    Messages:
    26
    Likes:
    42
    Dublin, Ireland
    5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

    I have only included a brief synopsis of each report and links to relevant pages from the report

    Gulf War and Health (2013)
    Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.
    http://books.nap.edu/openbook.php?record_id=13539&page=22
    http://books.nap.edu/openbook.php?record_id=13539&page=97
    http://books.nap.edu/openbook.php?record_id=13539&page=98
    http://books.nap.edu/openbook.php?record_id=13539&page=99
    http://books.nap.edu/openbook.php?record_id=13539&page=100
    http://www.nap.edu/openbook.php?record_id=13539&page=120

    Gulf War and Health (2010)
    Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=12835&page=210
    http://www.nap.edu/openbook.php?record_id=12835&page=211
    http://www.nap.edu/openbook.php?record_id=12835&page=212
    http://www.nap.edu/openbook.php?record_id=12835&page=213
    http://www.nap.edu/openbook.php?record_id=12835&page=214

    Gulf War and Health (2008)
    Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=11922&page=174
    http://www.nap.edu/openbook.php?record_id=11922&page=175
    http://www.nap.edu/openbook.php?record_id=11922&page=176
    http://www.nap.edu/openbook.php?record_id=11922&page=177
    http://www.nap.edu/openbook.php?record_id=11922&page=178

    Gulf War and Health (2006)
    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=11729&page=161
    http://www.nap.edu/openbook.php?record_id=11729&page=1612
    http://www.nap.edu/openbook.php?record_id=11729&page=163
    http://www.nap.edu/openbook.php?record_id=11729&page=164
    http://www.nap.edu/openbook.php?record_id=11729&page=165

    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)
    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.
    http://www.nap.edu/openbook.php?record_id=9953&page=343
    Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
    “ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”
    This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.
    http://www.nap.edu/openbook.php?record_id=9953&page=350
    http://www.nap.edu/openbook.php?record_id=9953&page=354
    http://www.nap.edu/openbook.php?record_id=9953&page=355
  5. Hermes

    Hermes

    Messages:
    26
    Likes:
    42
    Dublin, Ireland
    The IOM in some difficulty regarding definition of ME/CFS

    Kate Meck, IOM

    Dear David,
    Thank you for your feedback. All IOM reports follow a strict study process and committees are convened in accordance with this conflict of interest policy to ensure reports provide independent, objective advice. If you would like to be added to the listserv to receive updates on the study, such as when the provisional committee is announced, you may sign up for our listserv here: http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome.aspx.

    Best,
    Kate Meck

    David Egan, ME/CFS advocates and organisations

    Dear Kate

    Thanks for your reply. I hope we can work together to resolve this issue. There remain issues of conflict of interest, bias, lack of accuracy and consistency, lack of independence, and public interest issues in relation to IOM and its contract to define ME/CFS.

    Conflict of interest

    IOM itself has a conflict of interest as it is the author and owner of the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. It’s stated position in these 5 reports creates a conflict of interest, as it failed to include vital biological research findings, some 5,000 papers, and had psychiatric bias in all 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

    Bias

    IOM failed to look at the biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. Yet the IOM quoted the psychiatric papers, some of which had serious scientific and historical flaws and errors. And the IOM recommended psychiatric based treatments. This strongly indicates psychiatric bias in these 5 reports. Further details presented below in synopsis of reports and relevant pages from reports.

    Lack of Accuracy and Consistency

    The lack of accuracy pertains to the ignoring and omitting of important biological research and findings into ME/CFS which amount to approximately 5,000 papers in the 5 Reports into GWI below where ME/CFS is extensively mentioned and the IOM’s position on ME/CFS is stated. The omission of Canadian Criteria 2003, Nightingale Criteria 2007, International Consensus Criteria 2011 point to further lack of accuracy. The “primary research” source in these 5 GWI reports failed to include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. The reluctance and refusal to interview medical doctors who have successfully treated ME/CFS also blocked accuracy in the 5 reports.

    As regards consistency, the IOM’s position on ME/CFS may become inconsistent if it examines, analyses and includes biological scientific facts in the new definition which were not included in the 5 GWI reports.

    Independence

    The IOM selected the committees for these 5 GWI reports below where ME/CFS was extensively mentioned and the position on ME/CFS stated. The IOM oversaw these committees, was in regular communication with them and the IOM had the power to read the final report and recommend amendments or changes in line with scientific and medical facts and public interest issues.
    The continued selection of committee members with obvious psychiatric bias in 5 GWI committees producing 5 reports, all of them with psychiatric bias strongly suggests a pre-conceived position and viewpoints, a lack of independence and a lack of independent thinking. The latter being obvious through the omission of biological scientific and medical facts.

    The Public Interest

    There are matters here of great concern to the health and safety of the American people. This is outlined on the following web site detailing those people who have died of ME/CFS and it’s health complications - http://www.ncf-net.org/memorial.htm The neglect of patients through the use of ineffective, useless and harmful psychological treatments and the stigma and prejudice surrounding this in societies has been a major contributor to these deaths and years of suffering.

    5 Reports by IOM mentioning ME/CFS and stating their position on ME/CFS from 2000 – 2013

    I have only included a brief synopsis of each report and links to relevant pages from the report

    Gulf War and Health (2013)
    Reeves paper cited and contains several important flaws, including a prevalence figure of 2.54%. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Page 22 states that ME/CFS is a somatoform disorder, which is a vague psychiatric illness. Page 97 mentions somatic symptoms. The “primary research” source not included. Primary research should have been included and should have contained findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. The psychiatric based NICE guidelines were included in the definition along with the outdated Fukuda definition which is vague and imprecise, but the Canadian Criteria (2003) and Nightingale Critera (2007) and International Consensus Criteria (2011) were ignored and excluded. Psychiatric treatments such as CBT, GET and psychiatric drugs were recommended for ME/CFS. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored.
    http://books.nap.edu/openbook.php?record_id=13539&page=22

    http://books.nap.edu/openbook.php?record_id=13539&page=97
    http://books.nap.edu/openbook.php?record_id=13539&page=98
    http://books.nap.edu/openbook.php?record_id=13539&page=99
    http://books.nap.edu/openbook.php?record_id=13539&page=100
    http://www.nap.edu/openbook.php?record_id=13539&page=120

    Gulf War and Health (2010)
    Wessely cited and Straus cited. Wessely’s 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=12835&page=210
    http://www.nap.edu/openbook.php?record_id=12835&page=211
    http://www.nap.edu/openbook.php?record_id=12835&page=212
    http://www.nap.edu/openbook.php?record_id=12835&page=213
    http://www.nap.edu/openbook.php?record_id=12835&page=214

    Gulf War and Health (2008)
    Wessely cited and Straus cited. Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . Telephone and mail shots used as “primary research” source. The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=11922&page=174
    http://www.nap.edu/openbook.php?record_id=11922&page=175
    http://www.nap.edu/openbook.php?record_id=11922&page=176
    http://www.nap.edu/openbook.php?record_id=11922&page=177
    http://www.nap.edu/openbook.php?record_id=11922&page=178

    Gulf War and Health (2006)
    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. Bias in favour of psychiatry in terms of listed and cited research into ME/CFS in the GWI report . The “primary research” source did not include findings of immune dysfunctions, infections of blood, intestines, nervous system and muscles, toxins in the body, HPA axis dysfunctions, autonomic dysfunctions, mitochondria dysfunctions, exercise abnormalities, brain and neurological lesions, inflammation and dysfunctions. CFS used out of context in the GWI report and misused to represent every type of known and unknown illness in GWI soldiers. ME/CFS biological research papers ignored. Medical doctors with experience in treating ME/CFS patients ignored. Biological medical diagnostics and treatments ignored. Canadian Criteria (2003) ignored.
    http://www.nap.edu/openbook.php?record_id=11729&page=161
    http://www.nap.edu/openbook.php?record_id=11729&page=1612
    http://www.nap.edu/openbook.php?record_id=11729&page=163
    http://www.nap.edu/openbook.php?record_id=11729&page=164
    http://www.nap.edu/openbook.php?record_id=11729&page=165

    Gulf War and Health: Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)
    Wessely cited and Straus cited. Wesselys’ 1998 paper contains several important errors. ME/CFS assumed to be a somatoform disorder.
    http://www.nap.edu/openbook.php?record_id=9953&page=343
    Quotation from report http://www.nap.edu/openbook.php?record_id=9953&page=343
    “ The recognition of a new disease is far from straightforward (Wegman et al., 1997). The simplest statement is that it is a process (Kety, 1974), often taking years. The purpose of the process is to demonstrate that patients are affected by a unique clinical entity distinct from all other established clinical diagnoses. The individual “steps” for gathering and interpreting evidence are not clear-cut. Evidence from biomedical research plays a prominent, but not necessarily exclusive, role in defining and classifying a new disease. Social factors, including culture and economics, influence the recognition, classification, and definition of a new disease (Rosenberg, 1988; Aronowitz, 1998; Wessely et al., 1998).”
    This is contradicted by the way that ME/CFS and Fibromyalgia has been recognised and classified by some psychiatrists. Recognising and classifying a new disease is very straightforward for some psychiatrists, they just term it a psychiatric illness and in some cases give it a new definition and classification to suit their own purposes. They even create a competing definition of their own in order to take over an illness. And they conveniently ignore all the biological and biomedical evidence which prove its not a psychiatric illness. Several physical illnesses were wrongly classified as psychiatric in the past, but have since been proved to be physical and biological illnesses not psychiatric.
    http://www.nap.edu/openbook.php?record_id=9953&page=350
    http://www.nap.edu/openbook.php?record_id=9953&page=354
    http://www.nap.edu/openbook.php?record_id=9953&page=355

    Yours Sincerely
    David Egan.
    Chris, Sing and alex3619 like this.
  6. Chris

    Chris Senior Member

    Messages:
    578
    Likes:
    176
    Victoria, BC
    Don't know if this is the best place to ask a simple minded question--does anyone know from what sources the CAA derives most of its income these days, assuming that most users of this site do not fund it any longer?
  7. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    437
    Likes:
    432
    Illinois, USA

    "What about studies that compare "evidence-based" therapies to legitimate alternative therapies? Such studies are scarce but their results are clear and consistent: they show no advantage whatever for "evidence-based" therapies. An analysis published in the prestigious Clinical Psychology Review explored the topic in depth. As control groups more closely approximate legitimate psychotherapy provided by real clinicians (any kind of legitimate therapy), any apparent advantage for "evidence-based" therapy vanishes."
     
     
    EBM = Evidently Biased Malarkey
    leela and peggy-sue like this.
  8. Hermes

    Hermes

    Messages:
    26
    Likes:
    42
    Dublin, Ireland
    A new approach to IOM

    Email to Mr. Daniel Levinson, Inspector General of DHHS

    Subject: Conflicts of Interest, Bias and Fraud which require Investigation by the Inspector General

    Dear Mr. Daniel Levinson,

    I would like to draw your attention to serious and continuing matters involving conflicts of interest and bias in relation to the IOM contract to redefine the illness “ME/CFS” which contravene US laws and regulations and the policies of the Department of Health and Human Services and the IOM. This was briefly outlined in a letter sent to you by ME/CFS patient (and lawyer) Jeannette K. Burmeister on November 11th 2013. There is further corroborating evidence of this involving five separate reports by the IOM into ME/CFS between 2000 and 2013, which show clear signs of bias, lack of accuracy and integrity, and misrepresentation and which now create a conflict of interest for the IOM itself in the recent awarding of a contract to it by the HHS. I have detailed this below in correspondence I had with senior IOM personnel recently. (See Correspondence with IOM at end of letter)

    In addition to the above, there has been a massive fraud committed against the American people, the American taxpayers and the Department of Health and Human Services in relation to the diagnosis and treatments for ME/CFS or “Chronic Fatigue Syndrome” for several years . This fraud has consisted of denial of proper scientifically and medically verified diagnostics and treatments and best international practises for ME/CFS for many years and the use of inadequate, ineffective and medically unsound treatments which have cost the American government and economy many billions of dollars every year and in addition has cost the lives of many Americans. The financial and economic losses are approximated here at http://www.me-ireland.com/why.htm#100 while the cost in human lives is catalogued here at http://www.ncf-net.org/memorial.htm

    To put all of this in context, there was an uncovering of substantial fraud concerning Federal monies designated for ME/CFS research in the 1990’s. From fiscal 1995 through fiscal 1997, some $5.8 million that the CDC told Congress had been spent on CFS research actually went to other activities. Certain members in the CDC tried to cover this up at the time. There were no criminal prosecutions and court cases at the time, and no one was fired or resigned, which was unusual when one considers the seriousness of the crimes and the fact that Americans were dying of the illness. A trend has emerged and it has continued, a trend of fraud, abuse, denigration, neglect and mistreatment of seriously ill patients.

    I think it’s important to emphasise here that serious transmissible diseases within ME/CFS patient cohorts are being neglected and ignored and this is having devastating consequences for patients themselves, their partners and for the unsuspecting wider American public, and will continue to do so. The sheer scale of the problem means that swift and decisive actions are required at Federal level and State levels to resolve this ongoing issue. It will require a very thorough investigation by your office, possibly in liaison with other Federal investigative bodies including the FBI, NSA and Homeland Security as there are issues here which affect the lives and security of millions of Americans. The seriousness of the situation would merit Federal court cases and Congressional or Senate investigations to uncover the nature and extent of the frauds committed, the conflicts of interest and bias, the breaking of regulations and laws, the lies and deceptions, the lack of independence, accuracy and integrity in scientific papers, the wilful neglect of patients, the endangerment of lives, and the reckless and irresponsible behaviour of some persons in authority. People need to be brought to account and made answerable to the American people and government for this.

    In the interim, while this is being investigated, I would ask that the US government authorities (i) stop the IOM contract and (ii) heed the top ME/CFCS medical doctors and scientific researchers and immediately implement medically and scientifically sound diagnostics and treatments for the illness, using best international practises across the USA. These have been widely used and been found to be very effective. Links to the doctor’s letter and to their recommended Diagnostics and Treatments is included below:

    Open Letter to Secretary Sebelius by 50 ME/CFS Experts of October 25, 2013

    Myalgic encephalomyelitis: International Consensus Criteria, 2011.This supercedes 'Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003)' listed below.
    ME Primer for Healthcare Professionals: based on Myalgic encephalomyelitis: International Consensus Criteria, 2012

    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols, 2003
    For Medical Doctors - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Diagnostic and Treatment Protocols, 2003

    Using these new medical protocols, certain private medical clinics, some of them catalogued here at www.me-ireland.com/diag-treat.htm continue to lead the way in medical treatments and recoveries from the illness and in significant improvements in most cases. Following from this, the scientific research is focussing much effort on identifying the chronic immune dysfunctions and deficiencies and the chronic infections and opportunistic infections which continue to pose health risks to the patients themselves and their families and to the American population in general.

    I would ask that your office investigate the matters mentioned above and carry out actions necessary to safeguard the health and well being of these seriously ill patients and the wider American public at your earliest possible convenience.

    Yours Sincerely,
    David Egan

    Correspondence with IOM and Kate Meck attached
  9. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,247
    Logan, Queensland, Australia
    Personally I don't think any psychogenic illness can rate above level 5 in any evidence based scheme, its purely opinion. Measuring outcomes on diseases that only exist because a bunch of people claim they exist is problematic in the extreme. Most interventional studies, such as CBT/GET, use subjective outcome measures. The results are typically well within the range of expected biases in my opinion.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,507
    Likes:
    4,115
    Cornwall, UK
    I removed the #100 from the end of the above link as it stopped it from working.

    I've said it before, but your linked page provides useful figures, that anything that prevents people with ME from getting correct treatment is a false economy.

    It seems to be very much the case that governments are driven by the 'bottom line' of the almighty dollar, pound, euro, etc.

    So maybe a simple appeal that spells out just how much this psychoquackery is costing the country in question will have some positive effect?
  11. alex3619

    alex3619 Senior Member

    Messages:
    7,184
    Likes:
    11,247
    Logan, Queensland, Australia
    There is a difference between something that ideologically should save money, and something that actually saves money. I have long said that failing to invest in ME research is the financial equivalent of incurring a massive ongoing debt and doing nothing to repay it. The "interest" costs alone are probably of the order of two hundred billion dollars world-wide, per year. That's a lot of money to be losing.

    I get that figure from the 50 billion in the US (not sure if this is accurate though, can someone cite this?) and the fact the US is roughly one quarter of the world economy (or used to be, again this could have changed).
    taniaaust1 likes this.
  12. Hermes

    Hermes

    Messages:
    26
    Likes:
    42
    Dublin, Ireland
    Yes I agree with the postings here. Its important to quantify the losses in financial terms and human life terms and we have done this on the clinic web site. Its equally important to quantify cost-benefit analysis for national economy for all such clinics. Its also important to differentiate between costs to the economy and strategic investments (ME clinics) to reduce these costs and increase revenues for the economy.
    The proofs of efficacy lie in the facts and evidence established in the ME and CFS clinics which brought about significant improvements and recoveries ; some of these listed here at www.me-ireland.com/diag-treat.htm

See more popular forum discussions.

Share This Page