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ME: bitterest row yet in a long saga

Discussion in 'General ME/CFS News' started by Omar88, Nov 25, 2012.

  1. Firestormm

    Firestormm Guest

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    I have been sent Appendix 2 of the CBT PACE Manual Model from 2002 - a precursor then I presume to what was published alongside the PACE Trial itself.

    Authors of this 2002 Appendix: Chalder, Deale, Sharpe and Wessely. Date: 19/06/2002 (though this Appendix and the rest of the Trial papers at this time, all have the hand-written date of 1989 appended to them).

    Relevant quote then, in context, reads:

    I am guessing then that the experiment/model/hypothesis being tested here, the part above in quotes i.e. 'real but reversible by his or her own efforts' might come from a previous paper perhaps.

    There were several attached to this manual model, but I can't be arsed to look for something that might not be there, as the quote marks could be used by way of highlight - as per the question appearing above it I suppose.

    The papers cited were:

    Thanks to my supplier :)
     
  2. Firestormm

    Firestormm Guest

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    You know, I was having a think last night about all this stuff, and I came up with the idea of a 'Head-to-Head'. I'd get several of the 'names' that are connected to our condition from all the spheres, and play the part of David Dimplebum as he ably demonstrates on Question Time at the BBC. Try and get all the issues aired and give all the panel time to state their views.

    Wishful thinking I know. Be good though wouldn't it? Mind you I'd have to close the doors to any audience of 'activists' ;)
     
    justy likes this.
  3. ukxmrv

    ukxmrv Senior Member

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    I can't see the point Firestormm, it's not got anything to do with a lack of views being unaired, misunderstood or views not being stated.
     
  4. Firestormm

    Firestormm Guest

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    I think it's about communication UKxmrv. I'd just like to get a selection of known researchers/clinicians/whateve all together. You know?

    I mean, yes, it would have to be 'managed'. In as much I suppose as Question Time is for example. Just get all this opinion out in the open, recorded, on television.

    Getting them all in the same room would be an achievement in itself. Comprising the questions, keeping it a debate, and not a fight (joke) would be a challenge.

    It was only a silly notion :)
     
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  5. ukxmrv

    ukxmrv Senior Member

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    It's not a silly notion at all. Just wouldn't be useful under the dicussion topic of this thread. Wessley and his chums are not going to change their minds after a talk with real ME researchers and others.

    Invest in ME keep inviting doctors, politicians, reseachers to their conferences but they just aren't interested (the psych lobby and their supporters).

    The conference includes a physicians round table. Good ideas do come from that so it already exists in that form.
     
  6. Firestormm

    Firestormm Guest

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  7. alex3619

    alex3619 Senior Member

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    Hi Firestormm. We have a show that does this kind of thing every week in Australia (except over end of year holidays), called Q&A. They have a panel of independent people and some major proponents on different sides of an issue. A week or two back it was a former prime minister and a former leader of the opposition. There is also an experienced journalist running it, and its open to questions from the audience and the general public via twitter, SMS, email etc. I think shows like this can be done. It sounds like Question Time is a similar show.

    The problem is that people have to be willing to engage. I do not know how many who promote psychogenic views of ME and CFS would consider open debate. My guess is they would avoid it, but I could be wrong. Another problem is that if they do this in front of an audience its going to blow a few myths. People will see how angry we are, but also that we are not stark raving militants ... at least I would hope so.

    Anyone wanting to see Hooper Vs. Wessely?

    Bye, Alex
     
  8. Firestormm

    Firestormm Guest

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    Not solely those two. Several others I could see as being interested. It was only a 'wishful thinking' thought but I like the 'cut of your jib' sir :)
     
  9. ukxmrv

    ukxmrv Senior Member

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    I used to wish that it would be covered by the old "after dark" format.

    http://en.wikipedia.org/wiki/After_Dark_(TV_series)

    Just can't see SW or any of his friends having the courage to actually turn up. How many doctors do we have who would actually confront them though. It would be Professor Hooper (who has a sick wife and maybe couldn't do it) and I don't know who else?

    Dr Weir, Dr Enlander, Professor Brostoff?
     
  10. Sean

    Sean Senior Member

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    Q&A is not that good. I would be wary of using it to present our case. Though beggars cannot be choosers.
     
  11. biophile

    biophile Places I'd rather be.

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    What about "Compass"?
     
  12. Sean

    Sean Senior Member

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    Compass might work. A written piece on The Drum site at ABC is also probably a good option.

    I am very wary about the real time verbal 'debate' format, like Q&A uses. Both generally and for ME & CFS patients in particular. It is too easy a format for propagandists and show ponies to manipulate, and make sure the real and full story is not told.
     
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  13. David Egan

    David Egan Hermes33

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    I'm impressed with the contributions of Malcom Hooper and others on this forum. Well done on some excellent work and points. This wessely character is a charlatan and a self-deluded fool who deserves no award. I've a little present below for wessely and his lord haw-haws on the john maddox prize selection committee - the following is an excerpt from the web site www.cfs-ireland.com

    " Why ?
    Most of the medical and scientific community worldwide now accepts that ME / CFS is an organic, physical illness involving dysfunctions in the immune system, and nervous system, HPA axis and endocrine systems, and infections at some stage of the illness. This is backed up by 5,000 scientific research papers proving this is a biological and biomedical illness. The evidence of this is beyond reasonable doubt. This is now accepted by governments and health departments around the world. The CDC and the NIH in the USA which are the top medical and scientific research institutes in the world also accept this. Yet all of this is ignored and denied by certain British psychiatrists who wrongly claim it is a psychiatric illness. In Britain these particular psychiatrists have hijacked ME / CFS diagnois and treatment and made it into a psychiatric illness when it is not. They have manipulated politicians and civil servants to support their psychiatric agenda, and control ME / CFS treatment within the NICE clinics. Hundreds of thousands of people are being denied proper medical treatment for a physical illness and being given bogus psychiatric treatment, and they remain sick and cannot recover as a result.

    These particular psychiatrists have also ignored the medical and clinical findings from medical clinics and hospitals around the world which show that certain medical treatments based on biological and biomedical evidence can lead to recovery in many cases (1). And a significant improvement in the condition in all cases (1). It is un-scientific and unethical for these psychiatrists to ignore all of this and the overwhelming biomedical research findings from around the world. These few psychiatrists are seen as misfits by much of the medical and scientific community around the world.
    Research into the reasons behind the actions of these few psychiatrists reveal the following:

    (a) there has been an intense "turf war" between medical doctors and psychiatrists over physical illnesses such as ME / CFS, fibromyalgia, Gulf war illness, irritable bowel syndrome, chronic pelvic pain, chronic organophosphate poisoning, and other illnesses which are not fully understood by science, but biological and biomedical research suggests that they are biological illnesses which are complex and multi-faceted. These illnesses are worth many millions of euros to whichever side takes control over them - either the medical doctors or the psychiatrists. Some psychiatrists have attempted to convert physical and biological illnesses into psychiatric illnesses for their own financial gain and for the attainment of status, awards and prestige. And in the process, they have ignored and dismissed biological and biomedical evidence, some 5,000 research papers. This represents a rejection of science, the scientific method and causality, and the scientific ideals which emerged from the Age of Enlightenment by psychiatrists.

    (b) in 1970 two psychiatrists McEvedy and Beard published a paper claiming that M.E. was mass hysteria. This paper was not based on examination of biological and biomedical evidence and biological testing of patients ; it was based on presumptions and assumptions. The paper provoked a furious backlash from medical doctors and nurses who fell ill with M.E.. In 1978, The Royal Society of Medicine rejected the presumptions of this (psychiatric) paper and stated that ME / CFS was a physical illness. Yet even in 2012, despite all the biological and biomedical evidence accumulated that it is a physical, biological illness, some psychiatrists still choose to believe the presumptions of McEvedy and Beard in 1970.

    (c) some psychiatrists have conflicts of interest, that being very close links to health insurance companies. Some of these psychiatrists have executive positions in insurance companies. These companies have made massive savings from the denial of proper and expensive medical treatment for ME / CFS patients (2). Psychiatric treatments such as cognitive behaviour therapy and graded exercise therapy and psychiatric drugs are far cheaper than other treatments such as anti-viral, anti-pathogen and immune system, endocrine, mitochondria and neurological treatments. Instead of investing in people's health and full recovery, they are investing in cheap and ineffective treatments which impose higher costs on everybody and society in the medium to long term. It is obvious that some psychiatrists have helped health insurance companies make large savings, by not having having to make payments to ME / CFS patients, and these psychiatrists have benefitted financally from this arrangement with the insurance companies (2).

    (d) some psychiatrists have saved the government money by classifying it as a psychiatric illness and forcing patients to undergo, cheap, inferior and ineffective psychiatric treatments which keep them ill. Yet the economy, the government and society loses through losses in productivity losses in GNP and taxes which would have been earned by these patients if they had been given the proper medical treatment and recovered.

    (e) some psychiatrists get commissions and various financial benefits including paid holidays from psychiatric drug companies in return for prescribing their drugs to patients. The more patients they can label as "psychiatric", the more money they can make in commissions and benefits in kind.

    (f) by converting ME / CFS into a psychiatric illness, psychiatrists can make a lot of money from patients and from the government (7). This has proven to be financially lucrative for many psychiatrists. And the fact that ME / CFS patients don't recover from the use of psychiatric treatments and this continues for many years and decades, means the psychiatrists can keep milking the system over time.

    (g) furthermore these same psychistrists have created a new psychiatric term "general functional somatic syndrome" for certain illnesses such as irritable bowel syndrome (gastroenterology); chronic pelvic pain (gynaecology); fibromyalgia (rheumatology); non-cardiac chest pain (cardiology); tension headache (neurology); Gulf war illness; hyperventilation syndrome; and chronic fatigue syndrome (infectious disease). One psychiatrist in particular has in his "scientific " papers presumed that they are all alike and much the same; and he conveniently ignores the biological evidence which shows siginificant differences. He refuses to deconstruct the biological and bio-medical aspects of an illness and makes broad sweeping generalisations about illnesses. This is both un-scientific and unethical. It's another way of saying they are "all in the mind", not real physical illnesses. This is enabling psychiatrists to label these illnesses as psychiatric and make money out of them.

    (h) some psychiatrists have chosen to ignore the part played by organophosphate toxicity, household and work chemical toxicity and heavy metal toxicity in the development of human illnesses. Research has revealed that there is an average of 140 toxic chemicals, heavy metals and pollutants in the human body. Research also shows that there are 200 toxic chemicals, heavy metals and pollutants in the umbilical cord of babies when they are born. Since 1945 there has been a massive increase in environmental toxins which has found it's way into human food, water, liquids, air and human bodies, and there has been an accompanying increase in toxin related illnesses such as Cancer, irritable bowel, Gulf War Syndrome and autoimmune diseases, including ME / CFS and Fibromyalgia (The Autoimmune Epidemic, Donna Jackson Nakazawa. Touchstone. 2009). It is known that toxins can damage mitochondria and interfere with the Krebs cycle, and that this is the main problem in ME / CFS. Many people have recovered from these illnesses after intensive detoxification combined with medical treatment for physical disease processes. The scientific and medical communty need to further investigate the effects of these toxins on the human body and establish standardised diagnostic standards and treatment protocols which could be mainstreamed in all medical practises, and dismiss the presumptions and assumptions and hearsay of psychiatrists.

    (i) psychiatrists see the world through the lens of psychiatry. They see and classify things in psychiatric terms. It's a state of mind. It is in their nature to view many physical illnesses as psychiatric and this is certainly the case when an illness is new. For example, psychiatrists once labelled MS and Parkinsons disease as mental illnesses and used psychiatric drugs to treat them. And if there are financial benefits or fame to be acquired from labelling a physical illness as psychiatric, then some will do this.

    (j) social and cultural influences also have an impact. Misunderstandings about an illness can easily lead to a convenient judgmental position - that being to blame the patient, tell them "its all in the head". This is a lazy way to treat patients and ignores all of the biologicial evidence. Many societies suffer from inadequate understandings about issues and accompanying judgmental and extremist positions on these issues. Unfortunately, mocking, insulting and belittling disabled people is part of this.

    (k) Social and cultural conditioning in some societies also means there is a reluctance to question authority and to challenge authority, and this has been exposed in the recent banking scandals, insurance scandals, political scandals, church scandals, show-business and television scandals, etc. All of this abuse proceeded from the fact that many people were afraid to question and to challenge corrupt authorities. Many ill people remain ill because good people of integrity refuse or are afraid to stand up and challenge corrupt authorities. This problem still exists.

    (l) The success in explaining ME / CFS to anyone is dependent on their state of intelligence, their knowledge of the illness (which is almost zero in this country), their level of consciousness, and their ability to empathise with the suffering of another human being and willingness to accept people as they are regardless of disability or other perceived differences. We have to accept that many people, including well-meaning people, lack one or most of these factors, yet they would presume to be full of good intentions. The best thing they can do is learn about the illness, through reading www.cfs-ireland.com and other web sites, and learning to have empathy with a suffering humanity, and learning to accept people as they are without judgment, prejudice, presumption and assumptions. Unfortunately the psychiatrists by wrongly calling ME / CFS a psychiatric illness which is "all in the mind" and not really an illness have caused great harm to ME / CFS patients and this has led to society and other people condemning, judging and even physically attacking ME / CFS patients, and stigmatising them.

    (m) some psychiatrists were desperate to achieve fame and recognition as soon as possible and they thought they could do this by hijacking ME / CFS and converting it into a psychiatric illness. They then proceeded to write "scientific" papers full of their own presumptions, assumptions and suppositions about ME / CFS while ignoring the biological and biomedical evidence in over 5,000 research papers and ignoring the biomarkers for the abnormalities and dysfunctions found in ME / CFS. They then submitted these papers to scenitific and medical journals. Thus a process of misinformation and outright deception undermined scientific knowledge about this illness. They even tried to manipulate the World Health Organisation (WHO) to label ME / CFS as a psychiatric illness. This was done behind the scanes in a sly and devious manner.

    (n) some psychiatrists used the Oxford Criteria which is vague and ineffective, and then recruited patients with mental illness, but wrongly classified them as having ME / CFS for their "scientific" research trials (4,5). Furthermore, while selecting patients for trials, the psychiatrists conveniently ignored (4,5) and did not use the Canadian Criteria (3) which are based on biological and biomedical evidence. THe biomarkers for the main physical abnormalities and dysfunctions and infections in ME / CFS were completely ignored. This important ommission adds further evidence to the fact that many of their patients in these trials did not have ME / CFS (4,5) . Seriously ill patients who were bed bound or in wheelchairs were excluded from the trials, even though they were the most likely to actually have ME / CFS. Research by Jason et. al. (4), and the findings of the Canadian definitions scientific researchers (5) clearly show that research projects based on CDC criteria and Oxford criteria often recruited patients who did not have ME/CFS but had other illnesses such as depression, mental illness, chronic fatigue, and other illnesses some un-diagnosed.
    For example mr. wessely's PACE trial had the deficiencies mentioned above and had no control group, was unblinded, and engaged in trial design by altering the outcome measures at the end of the trial so as to give the impression that an unsuccessful intervention favoured by the investigators was a success when in fact the results were so bad that 21 months later, no recovery rates have been published. Several sychiatrists have claimed that cognitive behavior therapy and exercise therapy had a beneficial effect in their "trials" - for whom ? their psychiatric patients or those with diseases other than ME / CFS ? Their scientific "trials" had no recoveries from ME / CFS and nobody was able to return to work and resume a normal working and social life. Furthermore, they did not test for bio-markers for each of the abnormalities and dysfunctions present in ME / CFS and other objective data prior to, during and after these tests, in order to establish progress, and they did not continue this for 12 months, 24 months, 36 months to measure efficacy. And they ignored all the biological and biomedical evidence that exercise can be damaging to ME / CFS patients, and ignored the relapses and worsening of symptoms from exercise in ME / CFS (6). Furthermore they ignored the scientific and medical evidence that ME / CFS is a serious physical biomedical illness as shown by over 5,000 research papers. This was sloppy, badly designed and unethical research by certain psychiatrists and should be retracted and rejected by scientific journals.

    (o) some psychiatrists used the fact that they published these "scientific" papers to apply for positions on government advisory committees and consultative committees for the NICE clinics. They then used their position to enforce their misguided views on other doctors, on civil servants and the government and the NICE clinics in relation to ME / CFS treatment (7). This enables some psychiatrists and psychologists to keep milking the system while depriving patients of much needed biological and biomedical based treatments.

    A recurring pattern has emerged here of greed, selfishness, ego and self aggrandisement, deception, deviousness, misinformation, ignoring and denying biological facts and evidence. The behaviour of some psychiatrists has been totally unacceptable and unethical. The views, the papers and the presumptions and assumptions of some psychiatrists in relation to ME / CFS need to be rejected by the scientific community and the medical community.
    For more reading on this topic, read the following :
    - Response by Professor Malcolm Hooper to Wessely receiving the John Maddox Award
    - IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING MEDICAL PROFESSIONALS AND OTHERS? A Call for a Parliamentary Select-Committee of Inquiry into UK ME/CFS Policy
    - Consideration of Some Issues Relating To The Published Views of Psychiatrists of The "Wessely School"
    - Psychiatrists Paid by Outside Interests
    - Malcolm Hooper and Margaret Williams ask Peter White some questions
    - There is only one functional somatic syndrome
    - History of Prejudice
    - Testimony by Professor Malcolm Hooper to the British House of Commons in 2007

    References
    1. Campaign for a National ME/CFS Clinic (web site). Diagnosis and Treatments section, Recovery Database Section, http://www.cfs-ireland.com . Accessed November 2012
    2. Sophia and M.E. (web site). 'Psychiatrists paid by outside interests'. http://www.sophiaandme.org.uk/collusion.html Accessed November 2012.

    IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING MEDICAL PROFESSIONALS AND OTHERS? A Call for a Parliamentary Select-Committee of Inquiry into UK ME/CFS Policy

    Response by Professor Malcolm Hooper to Wessely receiving the John Maddox Award
    3. Myalgic encephalomyelitis: International Consensus Criteria, 2011.This supercedes 'Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003)' listed below.
    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003)
    4. Jason LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. J Disabil Pol Studies 2009; 20: 91-100. doi:10.1177/1044207308325995 Accessed on 10/02/2011
    5. Carruthers M. Bruce, Jain Kumar Anil, De Meirleir L., Kenny, et. al. Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. 2003.
    Carruthers M.,B., van de Sande I M, De Meirleir. L. K, et al. Myalgic encephalomyelitis: International Consensus Criteria. 2011.

    6. Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2): 59-111. http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&tabid=501 Accessed October 2012
    Twisk FN, Maes M. Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways. 2010.
    Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrin lett. 2009, 30(3): 284-299.
    Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E. Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up. Clin Rheumatol. 2011.
    IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING MEDICAL PROFESSIONALS AND OTHERS? A Call for a Parliamentary Select-Committee of Inquiry into UK ME/CFS Policy
    Response by Professor Malcolm Hooper to Wessely receiving the John Maddox Award
    "IACFS/ME Statement on the PACE Trial: The Issue of Illness 'Reversal'", 24 February 2011, The International Association for Chronic Fatigue Syndrome/ME (IACFS/ME),http://www.iacfsme.org/PACETrial/tabid/450/Default.aspx
    PACE: 'surprising and disappointing'", 18 February 2011, Action for ME, http://www.afme.org.uk/news.asp?newsid=1047
    ME Association press statement about the results of the PACE study", Tony Britton for the ME Association, 18 February 2011, http://www.meassociation.org.uk/?p=4607
    Some Mitochondria research findings listed here – http://www.cfs-ireland.com/scientific/ 3.htm
    "The cristae (the infoldings of the inner membrane of mitochondria) have gone, leaving honeycombed patterns. This suggests a toxic or stress phenomeon in the mitochondria."
    Mitochondrial abnormalities in PVFS. Acta Neuropathalogica, 1991, 83, 61-65.
    Professor Peter Behan, The Institute of Neurological Sciences, University of Glasgow, Scotland

    Some Exercise and Cardiac research findings & other research findings listed here - http://www.cfs-ireland.com/listing.htm
    VAN KONYNENBURG R. The Glutathione / Methylation Blockades in Chronic Fatigue Syndrome (ME/CFS), 2007 IACFS/ME Conference, http://phoenixrising.me/research-2/...ue-syndrome-by-richard-a-van-konynenbury-ph-d . Accessed October 2012
    VanNess JM, Snell CR, Stevens SR, Diminished cardiopulmonary capacity during post-exertional malaise in chronic fatigue syndrome. JCFS 2007; 14. 77-85
    Action for ME (2001): Severely Neglected ME in the UK: Membership Survey March 2001, London, Action for ME. This stated graded exercise made 50% of respondents worse.
    White AT, Light AR, Hughen RW, Bateman L, Martins TB, Hill HR, et al. Severity of symptom flare after moderate exercise is linked to cytokine activity in chronic fatigue syndrome. Psychophysiology 2010; 47: 615-624.
    Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. J Intern Med. 2012 Jan;271(1):64-81. doi: 10.1111/j.1365-2796.2011.02405.x. Epub 2011 Jul 13.
    Differences in metabolite-detecting, adrenergic, and immune gene expression after moderate exercise in patients with chronic fatigue syndrome, patients with multiple sclerosis, and healthy controls.White AT, Light AR, Hughen RW, Vanhaitsma TA, Light KC. Psychosom Med. 2012 Jan;74(1):46-54. Epub 2011 Dec 30
    Some more genetic research findings listed here - http://www.cfs-ireland.com/scientific/2.htm
    Falling off the PACE", Kimberly McCleary, [undated (Retrieved 26 July 2011)], The CAA (CFIDS Association of America), http://www.cfids.org/pdf/lancet-analysis.pdf
    7. Testimony by Professor Malcolm Hooper to the British House of Commons in 2007
    IS PROFESSOR SIMON WESSELY GUILTY OF MISLEADING MEDICAL PROFESSIONALS AND OTHERS? A Call for a Parliamentary Select-Committee of Inquiry into UK ME/CFS Policy
    Response by Professor Malcolm Hooper to Wessely receiving the John Maddox Award "
     
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  14. Esther12

    Esther12 Senior Member

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    Hi David. Welcome to the forum. Sorry for being a bit brusque, but I'm going off-line.

    I just started reading your post, and got to this:

    " This is backed up by 5,000 scientific research papers proving this is a biological and biomedical illness."

    That's one of those claims which I see floating around the internet, but I've never seen anyone show that it's true. I've never found one high quality and replicated study which could be truly said to 'prove' that 'CFS' is a 'biomedical' illness (pardon the scare quotes... all are simple words that can hide complicated problems). Just thought I'd post my initial though.

    @ others about a CFS debate:

    If it was a two hour debate, I expect Wessely would come off looking good. Six hours, and there might be enough time to explain the problems with his work. Generally though, other researcher tend to focus on their own work, rather than trying to pick apart the work of others: I think it would be a boring debate.
     
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  15. alex3619

    alex3619 Senior Member

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    The intereresting thing coming out of Ireland at the moment is an attempt to set up an extensive biomedical approach to treatment in the currentry. I hope they succeed and look forward to developments in this story.
     
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  16. David Egan

    David Egan Hermes33

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    Esther12, thanks for your welcoming message.

    Firstly, the points you raised, you will find a few thousand papers with biomedical evidence for ME / CFS at the following internet address http://www.cfs-ireland.com/databases.htm (This link was on the Scientific Evidence section on my web site)
    This uses the PubMed database which is fairly comprehensive. There are other scientific databases and University databases which you can query to gather more papers, and you could also contact several top scientific researchers in the subject area.

    A few studies have been replicated or made similar findings. The reasons this was not attained on a large scale lies in the fact that the CDC and NIH and other health research bodies around the world did not bother to fund biomedical and biological research into ME / CFS for the last 20 years, and what little funding was allocated was wasted on psychiatric-based research and muscle research. The CDC itself embezzled funds for ME / CFS research and some of their researchers joked regularly about ME / CFS. It was psychiatrists such as Wessely who played a key role in depriving ME / CFS research of funding through converting it into an imaginary illness which was "all in the mind". Many research projects were funded from the pennies and dollars of impoverished ME / CFS patients and their carers, families and advocates. So it should be obvious to you (or indeed anyone) why research into ME / CFS has been undermined and deliberately stagnated.

    And as for your comment regarding a debate with Wessely, well i would approach that situation in a highly structured and coordinated manner. I would bring in the medical doctors from the top 20 ME / CFS clinics mentioned on my web site, bring in leading researchers such as Malcolm Hooper and others, and bring in the parents and husbands / wives of those ME / CFS patients who have died. And we would all join together in one alliance in debate against Wessely and his t**ts and rip them apart in debate, whether it takes 2 hours, 3 hours, 10 hours, 24 hours to do it, we would do it. That's how we would win.
     
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  17. Shell

    Shell Senior Member

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    Feeling a bit cynical about it all now I've read it and ploughed through a load of well written thoughtful comments, many of which are defenses against scatter gun attacks on ME patients.

    The title of the piece invites anti-ME comments alone.
    Until journos in the MSM can climb out of the soap-opera approach to reporting and actually accept that such a thing as the truth does exist and they would be better reporting it - carefully - we won't get anywhere in the 'public opinion' stakes and that suits those who don't want to fund biomedical research.
    Despite all the money and egos that seem to be at the root of the bizarre way ME/Cfs (or whatever the hell this hideous disease is) has been mistreated; I just don't get it.

    Simon Wessley must be such a dryed up, cold person.
     
  18. Firestormm

    Firestormm Guest

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  19. Esther12

    Esther12 Senior Member

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    Hi David. Sorry for being brief again:

    re research on CFS: There's lots of research showing lots of different findings. I don't think that any of this research can be said to 'prove' that CFS is anything in particular. There are some findings that, to me, seem to provide some good evidence about the nature of some subsections of CFS patient's disability. I don't think that we can really go beyond that right now.

    I certainly think Wessely has been unhelpful for CFS patients, but this is another complicated topic. re 'all in the mind', I actually started a thread with some Wessely quotes about that here: http://forums.phoenixrising.me/index.php?threads/simon-wessely-and-all-in-the-mind.13979/ Again, it's complicated though (sorry, sorry for being a bit rushed about all this and not going in to more detail myself.)

    re a debate: I'm no big fan of Hoopers, and had some real serious problems with some of his older pieces. I did skim through a more recent release that I thought was much better though. I expect that CFS patients hold so many different views about things that we would struggle to form any unified position in a debate!
     
  20. Stukindawski

    Stukindawski

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    Of course, all the while Wessely is in the firing line being misquoted and arming himself with fresh barbs for the next SMC 'spam-all-news-outlets-from-the-bbc-to-the-guardian-bonanza', White is busy setting up his latest GET trial. Who knows what Chalder and Sharpe are up to? Wessely could now be to ME/CFS is what Cameron is to politics - a PR man who likely has very little practical involvement. Just gets his name on the album credits, does the interviews and picks up that royalty cheque, before doing a puff piece or two for the spectator (hmm, that right wing rag..he actually wrote for)

    If I had to choose between justice and a cure, I'd take the cure. The possibility remains that we could all get screwed by Professor Hooper's pride. I still respect him because he puts himself on and in the firing line consistently, but one too many misquotes and a person with the press in their hands can make a quest for justice look like the vendetta of a bitter rival. If anyone thinks I'm being harsh, you ought to read Alfred Lord Tennyson's Charge of the Light Brigade and find out what happens when 'good men' are set on a bad path. They might fight valiantly, but it ends in their demise. When the press reduce you to David Icke, ain't nothing gonna save you but a Lizard Army coup d'etat.

    If you are actually making a case against someone, I'm not actually so certain it's the smartest idea to fire every barb the second you uncover it either. Sometimes you might think a boxer has taken a bad blow, when they planned to take it and rode it out to minimise the damage. The sucker punch is the unseen or unblock-able.

    Also what's done is done, there's still time to put pressure on White's latest study since he still hasn't recruited enough patients to get it going yet. This, is now, as they say.

    The fact that non-psychiatric research is getting done, the ME conferences are getting numerous and bigger, and that journalists are prepared to cover more of the story (Sanchez Manning, Caroline Lavender, Sonia Poulton) means that things are moving along, gains are being made.

    In the meantime there are some promising studies going on around the world, they don't necessarily promise to be the silver bullet for fixing everything, but are important steps on a long and underfunded road. I wonder how ME/CFS would be right now if some of the energy poured into Wessely and pals was set to supporting current research projects. The sooner they get done, the sooner we'll get get the substantial evidence we're looking for.

    And trust me, I'm no saint here, I'm am talking to myself as much as anyone else. I've had the Hooper pom-poms out in the past because it satisfied my resentment of the medical establishment and nursed the frustration I feel due to the loss of my ability. But I'm getting older, and I'm bored of being angry. My soul wants to win, and where there is life, there is hope.
     
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