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Cause of ME a "state secret" in UK?

Discussion in 'General ME/CFS News' started by Min, Dec 12, 2009.

  1. max

    max *****

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    Hello all - I'm new on here and could do with some help regarding FD 23/4553/1
    I'm in a battle at the mo on Wikipedia CFS page in the discussion section and losing badly - any assistance advice would be welcome !

    (I'm a carer for my partner who is severely ill (14years) and we're still fighting)
  2. V99

    V99 *****

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    Do you have a link to the Wiki page?
  3. Ecoclimber

    Ecoclimber Senior Member

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    First post here. One must understand the system and how it works. Writing letters is all well and good but sometimes the only strategy to take is one that get there attention. I mean filing legal action including class action law suits against the parties involved for medical malpractice. This opens the door to be able to subpoena duces-tecum which is a broad base subpoena for any and all records pertaining to the cover-up and especially obtaining and and all records between the insurance company complicity and involvement with the psychological and psychiatric societies. Nothing is more effective to the the medical profession as a good multi million dollar lawsuit for medical malpractice. It will leave them shaking in their arrogance.

    The other effective measure is to form a lobbyist group that provides campaign contributions and information to key members that legislative oversight in the area regarding health care. Writing letters to the head of CDC is all well and good but they are a sub organization to the NIH. You have to go higher up to the members of the Congressional committee that have oversight and funding, purse strings for the NIH. If you get top dog to support your cause, then this will give the CDC a jolt to reassess their commitment to ME/ CFIDS.

    FYI
    1934
    1. Los Angeles City and California State, USA
    Epidemic among personnel at L.A. County Hospital, Ruth Protection Home and throughout California, paralleling poliomyelitis, often diagnosed as atypical poliomyelitis, sometimes including arthropathy.

    1936
    2. Fond-du-Lac, Wisconsin, USA
    An outbreak of "encephalitis" in St. Agnes Convent.

    1937
    3. Erstfeld, Switzerland
    Outbreak described as "Abortive Poliomyelitis."

    4. St. Gallen, Switzerland
    Outbreak in Frohburg Hospital described as "Abortive Poliomyelitis."

    1939
    5. Middlesex, England
    Outbreak at Harefield Sanatorium - "Persitent myalgia following sore throat."

    6. Degersheim, St. Gallen, Switzerland
    Outbreak described as "Abortive Poliomyelitis."

    1945
    7. University Hospital of Pennsylvania, USA
    Epidemic described as "pleurodynia with prominent neurological symptoms and no demonstrable cause."

    1946-47
    8. Iceland
    "Mixed epidemics of poliomyelitis and a disease resembling poliomyelitis with the character of the Akureyri Disease."

    1948-49
    9. North Coast Towns, Iceland
    "A disease epidemic in Iceland simulating Poliomyelitis" in three separate towns during this time.

    1949-51
    10. Adelaide, South Australia
    Outbreak of a disease resembling poliomyelitis.

    1950
    11. Louisville, Kentucky, USA
    Outbreak in the Nurse's Training School of St. Joseph Infirmary, later described as "epidemic neuromyasthenia."

    12. Upper New York State
    Outbreak described as resembling the "Iceland Disease...simulating Acute Anterior Poliomyelitis."

    1952
    13. London, England
    Outbreak at Middlesex Hospital Nurses' Home described as "Encephalomyelitis associated with Poliomyelitis Virus."

    14. Copenhagen, Denmark
    Outbreak described as "epidemic myositis."

    15. Lakeland, Florida, USA
    Outbreak described as epidemic neuromyasthenia.

    1953
    16. Coventry and Coventry District, England
    "An illness resembling Poliomyelitis observed in nurses."

    17. Rockville, Maryland, USA
    Chestnut Lodge Hospital student nurses described with poliomyelitis-like epidemic neuromyasthenia.

    18. Jutland, Denmark
    Outbreak of "Epidemic encephalitis with vertigo."

    1954
    19. Tallahassee, Florida, USA
    Bond JO. A new clinical entity? Lancet 1956; 2:256.

    20. Seward, Alaska
    Outbreak described as "Benign Myalgic Encephalomyelitis (Iceland Disease)."

    21. Berlin, Germany
    Among the British Army, a "further outbreak of a disease resembling poliomyelitis."

    22. Liverpool, England
    Outbreak among medical and nursing staff in a Liverpool Hospital.

    1955
    23. Dalston, Cumbria, England
    "...an unusual disease seen in epidemic and sporadic form in general practice in 1955 and subsequent years."

    24. London, England
    Famous outbreak of benign myalgic encephalomyelitis among Royal Free Hospital staff.

    25. Perth, Western Australia
    "Virus epidemic in recurrent waves."

    26. Gilfach Goch, Wales
    Outbreak of Benign encephalomyelitis.

    27. Durban and Durban City, South Africa
    Outbreak among nurses at Addington Hospital called "The Durban Mystery Disease" describing neuromuscular dysfunction, and epidemic myalgic encephalomyelopathy, including sporadic cases in Johannesburg of a outbreak resembling poliomyelitis.

    1955-56
    28. Segbwema, Sierra Leone
    An outbreak of encephalomyelitis.

    29. Patreksfordur and Thorshofn, Iceland
    Unusual response to poliomyelitis vaccination.

    30. North West London, England
    Outbreak of acute infective encephalomyelitis simulating poliomyelitis among a residential home for nurses.

    1956
    31. Ridgefield, Connecticut, USA
    An epidemic of neuromyasthenia.

    32. Punta Gorda, Florida, USA
    An outbreak of epidemic neuromyasthenia.

    33. Newton-le-Willows, Lancashire, England
    Outbreak described as "lymphocytic meningo-encephalitis with myalgia and rash," "An outbreak of a disease believed to have been cause by Echo 9 virus," with other varying descriptions.

    34. Pittsfield, Williamstown, Massachusetts, USA
    Outbreak of "epidemic neuromyasthenia" later described as benign myalgic encephalomyelitis. (Included in this summary are sporadic cases in Hygiea, Sweden, with descriptions of encephalitis, meningitis or poliomyelitis; Coxsackie B and Echo Virus infections; benign myalgic encephalomyelitis.)

    1956-57
    35. Coventry, England
    Outbreak described as epidemic malaise and benign myalgic encephalomyelitis.

    1957
    36. Brighton, South Australia
    Outbreak described as "Coxsackie, Echo Virus meningitis and mylagic encephalomyelitis", "Epidemic myalgic encephalomyelitis," and "Benign myalgic encephalomyelitis."

    1958
    37. Athens, Greece
    An outbreak of benign myalgic encephalomyelitis in a nurse's school, "periostitis and arthropathy noted." (Included in this summary is an outbreak of benign myalgic encephalomyelitis in Switzerland.)

    1958-59
    S.W. London, England
    Reports of sporadic cases of myalgic encephalomyelitis.

    1959
    38. Newcastle upon Tyne, England
    Outbreak of benign myalgic encephalomylitis.

    N.W. London, England
    Reports of sporadic cases of influenza-like illness

    England
    Article describing sporadic cases and "The psychiatric sequelae of Benign Myalgic Encephalomyelitis."

    1961
    Basel, Switzerland
    Sporadic case of benign myalgic encephalomyelitis described.

    1961-62
    39. New York State, USA
    Outbreak described as epidemic neuromyasthenia in a convent in New York State.

    1964-66
    40. N.W. London, England
    Outbreak described as epidemic malaise and epidemic neuromyasthenia.

    41. Franklin, Kentucky, USA
    Outbreak of "neurmyasthenia" in a Kentucky factory, possibly due to mercury exposure.

    1965-66
    42. Galveston County, Texas, USA
    Outbreak described as "Epidemic Neuromyasthenia Variant?" and "Epidemic Diencephalomyelitis," the latter describing neuropsychiatric, cardiovascular and endocrine disorders.

    1967-70
    Edinburgh, Scotland
    Sporadic cases resembling benign myalgic encephalomyelitis.

    1968
    43. Fraidek, Lebanon
    Report on an epidemic of benign myalgic encephalomyelitis.

    1969
    44. State University of New York, USA
    Medical Centre - report of epidemic Neuromyasthenia and "unidentified symptom complex."

    1970
    45. Lackland Air Force Base, Texas, USA
    Epidemic Neuromyasthenia reported. "A syndrome or disease?"

    1970-71
    46. London, England
    An outbreak of "epidemic neuromyasthenia" among nurses a the Hospital for Sick Children, Great Oromond Street.

    1975
    47. Sacramento, California, USA
    "200 hospital staff in the [Mercy San Juan Hospital] fell ill in August September 1975. The epidemic appears to have spread to the children of the hospital staff and from there to the children's teachers. 43 have been seriously disabled with chronic illness from 1975-1992" [at publication of this text].

    1976
    48. Southwest Ireland
    Reports on Mylagic Encephalomyelits and epidemic neuromyasthenia in this region.

    1977
    49. Dallas-Fort Worth, Texas, USA
    "Epidemic Neuromyasthenia" reported.

    1978
    [Ed. note: Dr. Hyde's text notes that the first major M.E./CFS Symposium was held at the Royal Society of Medicine in London in this year. M.E. aka epidemic neuromyasthenia, viral relationships to this disease, biochemical abnormalities in patients and other subjects were discussed by experts such as Shelokov, Ramsay, Richardson, Behan, Parish and others.]

    1979
    50. Southampton, England
    Outbreak of M.E. in a girls' school.

    1980-81
    51. West Kilbridge, Ayrshire, Scotland
    M.E. epidemic reported in a rural medical practice.

    1980-83
    52. Helensburgh, Scotland
    Coxsackie B outbreak reported in a general practice.

    1981-82
    Stirlingshire, Scotland
    Sporadic cases of M.E. reported.

    1982-84
    53. West Otago, New Zealand
    Outbreak first described and an "unexplained illness," later as M.E. Included here are outbreaks in Dunedin and Hamilton New Zealand.

    1984
    "From 1984 until 1992 [at publication of this text] an endemic period occurred in which an usually large number of cluster and epidemics of M.E./CFS have been recognized in North America. After an apparent initial increase in the morbidity in 1983 there seemed to have appeared in late summer of 1984 an unprecedented increase of sporadic and epidemic cases across North America. Although certain geographical hot spots seen to have taken up much of the medical interest, this endemic situation probably represents an unusual and unremitting morbidity in all areas of the United States and Canada." -Dr. Byron Hyde-

    54. Incline Village, Lake Tahoe, Nevada, USA
    "A chronic illness characterized by fatigue, neurlogic and immunologic disorders and active human herpesvirus type 6 infection." "This community epidemic, apparently started in a girls' basketball team, then involved primarily teacher in at lest three high schools, and then large numbers of the community."

    55. Chapel Hill, North Carolina, USA
    "Epidemic amongst members of The North Carolina Symphony Orchestra. Low NKC [Natural Killer Cells] associated with high yield of lymphoma, astrocytoma, glioma."

    56. Montreal, Quebec-Ontario, Canada
    "Over 500 cases of M.E./CFS documented during August-November 1984 period. This endemic was active in all parts of Canada during this period and appears [to] have maintained its activity until the time of writing in 1991."

    1984-85
    57. Truckee, California, USA
    M.E. epidemic involving teachers and students.

    1985
    58. Lyndonville, New York, USA
    M.E. epidemic in a rural community involving children and adults.

    59. Yerington, Nevada, USA
    "In the same area [not far from Truckee, California] an M.E./CFS-like epidemic reputedly occurred in a reservation of American Native people."

    1986
    60. Placerville, California, USA
    "Outbreak of chronic fatigue syndrome 'coincident with a heavy contamination of the local unfiltered water supply'."

    1988
    61. Sonora, California, USA
    "More than 35 children and adults were diagnosed with M.E. in the mountain country 100 miles from Lake Tahoe. Many of these patients were associated in some way with Columbia Community College."

    1989
    62. Roseville, California, USA
    Rosedale Hopital reported 11 cases of M.E./CFS among staff.

    1990
    63. Elk Grove, California, USA
    M.E. epidemic among teachers and students.
  4. max

    max *****

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    Hi V - heres the link

    http://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome

    the bit in question is down at the bottom of the page under the heading "freedom of Information"

    have a look and see what you think - I accepted that my post may cause 'issues' amongst their bretheren but even so, my first edit was removed in 3 minutes!!
  5. Carrigon

    Carrigon Senior Member

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    How did we ever get away from the name Poliomyelitis? And were there ever any cases prior to the 1934 LA outbreak? It would indicate that this is an old disease or an industrial revolution caused disease. I thought I had read of it being described as early at the 1860's or 1880's, but in sporadic, random cases.
  6. max

    max *****

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    For V99

    Doesn't matter - dead horses and flogging spring to mind - kept me strangely amused for a couple of nights - rules are rules and I apparently broke some. I challenge anybody to insert a comma in that place without getting it rammed back down your throat.

    If there are any journalists left out there with bottle that can beg steal borrow or pay vast amounts of money to gain access to FD23/4553/1 (with personal patient details blacked out of course!!!) and post it on Wiki with references then I would be eternally greatful - I pity anyone diagnosed with ME to visit wiki as their first reference for information - yes its referenced and sourced but so were WMD's etc etc etc etc. If I had any hair left on my head then I would willingly rip it out.
  7. Advocate

    Advocate Senior Member

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    It's striking to see 63 epidemics listed clearly like that. I'm glad somebody's keeping track. Did you research and compile the list yourself?
  8. Advocate

    Advocate Senior Member

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    Bless you for taking care of your partner. I wish I could help with the Wikipedia page, but am clueless. I hope some of the knowledgeable people on this form will be able to help you.
  9. max

    max *****

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    ..... I'm touched by your comment - its the nicest thing anyone has ever said to me - many thanks - its not difficult to care for someone who is incredibly brave and strong -
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Max

    I'm afraid, Max, I don't have time to discuss this issue, but you may be interested in this posting on my site, dated 28 December 09.

    This is a copy of the response received from the Public Services Development Unit, National Archives to a request for information under the Freedom of Information Act submitted in December, last year, by a third party.

    http://meagenda.wordpress.com/2009/...-services-development-unit-national-archives/

    Response from Public Services Development Unit, National Archives
    22 December 2009

    Suzy
  11. max

    max *****

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    Thanks Suzy - Have read their statement - not impressed - and not convinced its over.

    max
  12. starryeyes

    starryeyes Senior Member

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    Thank you Muffin. This is excellent info to have. You go Girl! :D
  13. starryeyes

    starryeyes Senior Member

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    Thank you for trying Max. I tried too. We have a thread here somewhere on PR called "Wiki Wars". You are to be commended for being so caring as a carer. :Retro smile:

    Most of us are way too brain-fogged to take Wiki on unfortunately. Our patient support groups are useless to us when it comes to this kind of thing too. We are just left to rot.
  14. knackers323

    knackers323 Senior Member

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    here is a theory. Lets say this UK state secret is that they know xmrv is the cause of cfs? And people like weesley have been put in place to push the psycological line to deliberately keep it hiden. It is only that a private, non government run lab stumbled across it that it has now come out.

    If this were true we should be very worried that this discovery will be buried again and we may miss our chance for answers. Is this why we are seeing the delay with the Alter paper?

    In my mind I dont think this could be a so far fetched scenario. I cant believe we cant get this information released somehow.

    If there is supposedly 17 million of us worldwide with cfs, much more than say MS, then why are these other conditions so well known and having things done to help the cause, when nothing is being done for us? (In Australia there is a national campain every year, the MS read-a-thon, where all primary school children get sponsored to read as many books as they can in a month to raise money and awareness)

    Maybe its time we as a group start trying to implement ideas like this and demend more be done, because obviously no one is coming to offer us any help. Are we making it too easy for governments to go on ignoring us?
  15. abbay

    abbay

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    yeah i agree with you...........Malpractice is a specific legal term related to lawsuits alleging various different circumstances leading to damage to a patient. Malpractice suits may allege various mistakes made by doctors or other medical professionals, including misdiagnosis, mistreatment, or various types of negligence. Not all errors in medical diagnosis and treatment are necessarily malpractice, because there are certain risks and margins for error that arise inherently in the practice of medicine...i think you can get more reviews from the below link..

    http://www.medical-malpractice-court-cases.com/
  16. Enid

    Enid Senior Member

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    Stunning piece of history on "outbreaks". One wonders whether research on the findings taken together might throw up some more light. Polio like symptoms very much part of my problems. Thank you for posting.
  17. Cloud

    Cloud Guest

    "Concerted" and immediate may be necessary to prevent forgery of the original info in those documents. If the info is that insidious and possibly incriminating, and they have gone to these lengths to hide facts, it also seems likely that they would alter the documents if forced disclosure were imminent?
  18. leela

    leela Slow But Hopeful

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    What we really need is someone within that organization to send the file to Wikileaks. How do we do that? Is anyone connected enough in the UK to know who/how
    to contact to launch an effort to recruit the leakage? For those of you unfamiliar with Wikileaks, it is a totally protected fully anonymous untraceable way to provide
    classified or sensitive information to the public. Really neat guy started it:
    http://wikileaks.org/wiki/WikiLeaks:About
  19. Mark

    Mark Acting CEO

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    One thing I am curious to know is whether there are equivalent secret files for other illnesses. If these files really are blanked to protect patient data, and this is a normal sort of thing, then there should be masses more such files for all kinds of other illnesses. Secret IBS files, MS files, etc etc anyone? Or are we the only ones?...
  20. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Secret IBS files - love it! Thanks Mark!

    (from armchair, UK)

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