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Can You Come for a Visit? My ME/CFS Says No
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Please sign the following iPetition...( Panorama investigation)

Discussion in 'Action Alerts and Advocacy' started by sproggle, Mar 21, 2010.

  1. sproggle

    sproggle Jan

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    Update:
    Our petition is now hosted on iPetitions... please sign! :)
    Please follow the link below and sign our petition to help us highlight the plight of ME sufferers by getting the BBC Programme Panorama to investigate and highlight the ways in which sufferers have been marginalised and neglected by UK government bodies.

    http://www.ipetitions.com/petition/meinvestigation/

    Thank you x

    (I apologise if you have already signed through the email address I provided, please sign again this way.)

    *It has been updated and hopefully improved upon since the draft was posted below please view the finalized petition &sign at iPetitions*




    Hi all,

    * Note this is the first draft I will soon be adding a paragraph concerning the safety of the blood supply &may also add to the arguements as the XMRV situation develops...


    Our Facebook Group Page is called Panorama ME Investigation Campaign (by Getting ME on TV!)
    http://www.facebook.com/home.php#!/group.php?gid=397706469637&ref=ts
     
  2. starryeyes

    starryeyes Senior Member

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    Thanks Sproggle. :Retro smile:
     
  3. free at last

    free at last Senior Member

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    Nice one, Jan Not sure if you read my post. If i had saw this, i would have shut the F up. Just saw it now, signing it now. Great idea, This is what you all need to be thinking, its hard i know as many of you are so ill, but dont waste energy on pointless things, yes get support and information and share each others storys. But dont throw your preciouse energy on things that ultimatley will achieve Zero. This is great. I love this idea. In the memory of poor Sophia, I hope the team consider this, i really do. Damm long overdue. i assume this email address is to be fowarded by you I Know you all will sign this too
     
  4. sproggle

    sproggle Jan

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    Thank you guys, just when I thought this thread had been completely over looked I get two positive responses! :hug:

    I have just about finished updating the petition as I decided it needed to be a bit more focused and concise considering it will be probably be a pressed for time TV researcher that reads it.

    Anyway, will post updated version here also when it's done. Thank you for your support.

    I also have an email that can be forwarded to encourage people to sign I will post that also in the next few days incase people wanna invite others to sign that way.

    Jan xx
     
  5. Countrygirl

    Countrygirl Senior Member

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    Well done Sproggle. :Retro smile: I will gladly sign...have tried, but can't find it. :ashamed:

    Okay, well, it is nearly 1 a.m. I've managed to sign.

    Thanks.
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thank you very much, Sproggle! Actively interesting/petitioning the media is crucial to us!!!
     
  7. Mark

    Mark Acting CEO

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    Brilliant Sproggle, just brilliant.

    I often feel let down by the advocacy write-ups, a lot of them aren't rigorous or well-presented enough and seem like they could do with some proof-reading and more judicious editing, but yours reads so well to me that the only thing I spotted on a quick reading was one "who's" / "whose" error. That's an incredibly low error rate. A lot of British journalism can't better that! As regards the length, I normally feel these things read to the neutral as long-winded and baffling, but I think this one is absolutely fine in its context, and I think it's fine to have a very short opening statement of what the petition is, followed by a longer expansion on the detail.

    The only thing you forgot to mention is that we don't want Esther Rantzen in the doc. :D

    Would you mind PMing me when the final draft is complete and I'll give it one last proofing? Unless of course you're confident you have that covered...

    Is it OK for people from overseas to sign it? And if so, perhaps they need the signficance and potential value of a Panorama explaining a bit.

    UK sigs will be much more valuable of course, so if there were an easy way to identify all the UK-based members and PM them about it, that would be worth doing. And get them all to pass it on to friends and family.

    Thanks again - really great work.
     
  8. Mark

    Mark Acting CEO

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    Another thought...

    When the XMRV association is confirmed by an independent study, it seems to me that the possible risk to the general population, and the scandal of letting the situation go on so long without being addressed, combined with the question of why the UK studies covered it up / "is it in the UK?" - all of that seems like a really explosive story and perfect for Panorama. I guess what their ideal story would be, is something that they can safely expose (ie something which nobody knows yet and isn't universally accepted, and which is nevertheless clearly true), which is both explosive and shocking and impacts everyone - and XMRV fits the bill perfectly. Also, if it were about XMRV, that would seem a preferable candidate to hang it all on, being new to the public and all. Don't know how all that might influence your draft, or accompanying letter or whatever, but I just mention it because it seems like those factors would be significant things for them.
     
  9. sproggle

    sproggle Jan

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    Hi Mark

    thank you for your helpful posts :hug:
    too brainfogged /dead on my feet to read properly or reply right now I'm just off to :In bed:

    I think you said summat bout me PMing you?? but hopefully you'll spot this!!

    And my attachment has worked, am having probs!! :Retro mad:

    View attachment Altered..pdf

    Think it's sorted, anyway attachment should be pdf of updated, petition letter.
     
  10. Tammie

    Tammie Senior Member

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    Sproggle, this is wonderful.....not sure if you want signatures from the US, but I sent the email to sign it if you do
     
  11. Galena1

    Galena1

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    Hi All - New 'Kid( I wished!) on the Block' and my first Post.
    Sproggle - A comprehensive and valid document. Perhaps Panorama would like to include in their investigation the farcical ATOS (UK) 'medicals' that are having such a negative impact on the health and finances of ME sufferers.
     
  12. sproggle

    sproggle Jan

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    Thanks Tammie! yes all signitures welcome, where ever ya from.

    Welcome Galena1!! :victory: honoured your here for your first post! :Retro smile:
    Can't say I know anything about this particular group with regards to medicals or peoples expriences of them. Is it that all disabillity medicals are done through them? I certainly agree they are pretty useless when assessing disability in ME. Do you have a link? The official ATOS site is just them saying they're great lol! :innocent1:

    Jan xx

    *To support our petition please send ya name and general location to
    meadvocacyalerts@googlemail.com

    Just a quick plug! ;)
     
  13. sproggle

    sproggle Jan

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  14. Countrygirl

    Countrygirl Senior Member

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    Welcome fellow Endlander! :hug: :D You are joining fingers, me and mermaid, who are living close by.

    Yes, the ATOS medicals are a disgrace and there needs to be a loud voice of protest about them. They are a national scandal and amount to persecution of the sick.

    First of all, we have to complete the U.K. XMRV testing and then we can do something about this shabby outfit.

    Welcome Galena 1. :balloons:
     
  15. sproggle

    sproggle Jan

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    For those that don't know Panorama is the leading bbc Investigative Journalist documentary series in the UK. They do many 30min programmes but also extend programmes to upto an hour when the subject requires it. It has a lot credibility and had taken on difficult subjects and organisations in the past including investigating GlaxoSmithKlein with regards to Seroxat in 2002 transcript: http://news.bbc.co.uk/1/shared/spl/hi/programmes/panorama/transcripts/seroxat.txt


    Few more additions, will definitely leave it alone now lol! :Retro smile: It's soo tantalizingly close to being finished!!

    :victory: View attachment Altered..pdf :victory:

    Anyone that's up for it, proof reading is very welcome,

    Thanks xx



    ( To sign send ya name &general location to meadvocacyalerts@googlemail.com )
     
  16. Galena1

    Galena1

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    Hi and thanks for the welcome. You really do need to be aware of the aims of ATOS and how they operate. As far as I am aware ATOS have been contracted by the DWP to carry out all UK medicals. Read a report somewhere recently, typically I've forgotten where, that confirmed what I already new, that ATOS 'doctors' are paid by results (ie getting people off benefits, or at least reducing them). Some of these ATOS people are making 1000s a week out of the system.

    I've also visited the ATOS website. The last time I saw anything like it was when I was in a field owned by a cattle farmer and I was surrounded by heaps of similar stuff!
    Check out the posts here - http://www.forums.aboutmecfs.org/sh...w-the-system-will-cheat-you&highlight=Galena1
     
  17. Mark

    Mark Acting CEO

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    Further Work

    I have just mailed Sproggle the following suggestions for next steps, the first 2 being the immediate jobs I'm recommending before sending. Hopefully the community can help out with this workload!

    1. In order to enable the petition to be both submitted quickly AND be allowed to gather additional signatories, create a petition at that petitions site, referencing the full document over the web (not only in PDF format) if the 150-word limit is fixed. Perhaps a form of words in the petition using just the first paragraph or two and referencing the full letter. At the same time, in the document/letter, in the signatories section (immediately after Yours Sincerely) follow up Yours Sincerely with your name, followed next by a list of all the named signatories starting with the most distinguished (lettered) signatories you have acquired, and at the end of the list, reference the Petition on the web site with text such as "Further signatories to this petition are continuing to be added via this online petition at petitions.org".
    THAT WAY YOU CAN HAVE YOUR CAKE AND EAT IT! Send now, and have the signatories list grow afterwards.

    2. When you send the letter, phone them up a few days later (or get someone else to do it on your behalf via the forum) asking if they have received it and drawing their attention to the online petition. When the online petition passes certain numbers of signatories, phone them up again to mention that "we now have 1000 signatories" etc and ask if a decision has been made yet.

    3. It's also worth someone phoning them up and keeping in contact and passing them on to trusted contacts as they conduct their investigations, to try to make sure they don't get sidetracked by confusadors into talking to the wrong people. Getting a personal relationship with someone involved at the BBC could be crucial.

    4. It is worth continuing to campaign hard for more signatories, by publicising to ME/CFS organisations, bulletins, etc. That is a matter of bumping the Panorama thread daily at the right time by posting a brief update, and asking people what they can do to help publicise it. Even though we may already have enough signatories, as with Dr Myhill every extra weight above the critical mass is still worthwhile because the huge and overwhelming response will carry extra weight in the enthusiasm of the research team that they have an important issue here. Ask everyone to email all their sympathetic friends about the petition, and asking them to forward it to anyone who might sign.

    5. Looking further ahead, this document is in my view of such worth that it should be re-used and made prominently available to ME/CFS campaigners as a resource. A suitable permanent web location for it should be found, Cort may also be able to suggest an appropriate prominent location on Phoenix Rising.

    6. We could have explored further refinements to the presentation, including e.g. putting 2 or 3 quotes (such as quote 3 from the references) at the top as an introduction, highlighting the questions asked in bold, etc. Anything can always be improved, but you also have to draw the line according to time deadlines. But it should be further developed along these lines, on dedicated web space, and re-used in other contexts (letters to MPs etc). So I see this document as the basis for much enjoyable ongoing work!
     
  18. Mark

    Mark Acting CEO

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    The Petition in text format

    [FONT=Times New Roman, serif]For clarity, this document uses ME in reference to the disease Myalgic Encephalomyelitis, CFS in reference to idiopathic chronic fatigue, and CFS/ME when referring to the attempts by [/FONT][FONT=Times New Roman, serif]psychiatrists[/FONT][FONT=Times New Roman, serif] to merge the two and redefine Myalgic Encephalomyelitis as a somatoform disorder [/FONT][FONT=Times New Roman, serif](i.e. a psychiatric condition).[/FONT]


    We, the undersigned, request that the Panorama Team conduct an investigation into the conduct of the Department of Health, Medical Research Counciland National Institute for Clinical Excellence with regards to the diagnosis, treatment and research of the neuro-immune disease Myalgic Encephalomyelitis (ME) [1] - the disease that affected the late Lynn Gilderdale. [2]

    Why has the Department of Health allowed psychiatrists to dismiss a seriously debilitating [3], potentially fatal disease as so called “chronic fatigue syndrome”? Why have psychiatrists been allowed and even encouraged to monopolise both treatment and research of a disease?

    These government bodies are responsible for sufferers of ME being given a meaningless “waste basket” diagnosis of “chronic fatigue syndrome” and then prescribed Cognitive Behavioural Therapy(CBT) “to correct their abnormal illness beliefs”, in addition to being coerced into potentially dangerous and unproven Graded Exercise Therapy(GET) programmes. When this approach fails to work, or results in further disability, it is the patient that is often blamed for failing to recover.

    The UK is a member of the World Health Organisation(WHO), which has defined ME as a neurological disease since 1969. The criteria for ME are best described by the Canadian Consensus Document.[4] Psychiatrists use their own vague Oxford Criteria [5] which requires neither myalgias nor encephalomyelitis, the main criterion being only “fatigue”. Those using the Oxford Criteria in relation to “CFS/ME” are in fact studying only idiopathic chronic fatigue and claiming otherwise.

    The Wessely School [6] psychiatrists claim that ME does not exist [7], and that patients are in fact suffering from “chronic fatigue syndrome”, a somatoform disorder (i.e. psychiatric). They insist that doctors should avoid legitimisation of symptoms [8] and recommend that no investigations should be conducted to confirm the diagnosis [9]. Despite well documented evidence to the contrary [10], in 1997 Michael Sharpe stated his view that “Suicide is the only cause of death in CFS” [11]. The Wessely School “medical” advisors are influential in the UK benefits system and oppose the payment of disability benefits to “CFS/ME” claimants [12]. In 1999 Michael Sharpe revealed his view towards “CFS/ME” patients by referring to them as “the undeserving sick”. This campaign of misinformation [13] has led to some ME sufferers being dismissed as malingerers by their doctors and on occasion verbally abused [14]. There have also been attempts to have ME reclassified as a psychiatric disorder [15].

    NICE does not acknowledge or recommend the tests that diagnose ME. Instead NICE recommends tests known not to show disease and as a result there is no empirical diagnosis available on the NHS. There are many abnormalities to be found in ME patients, when the correct tests are done, including abnormal blood flow to the brain, brain lesions, abnormal spinal fluid and immune system dysfunction [16]. Instead diagnosis remains that of “exclusion” and the absence of a proper medical investigation also leads to misdiagnosis and neglect of patients with treatable conditions [17].

    The government-funded MRC [18] is intended to be an independent body that supports research across the biomedical spectrum. With regards to ME, this is not the case. The soon to be published MRC PACE [19] trial, studying the effects of CBT and GET, is just one example of government funds being awarded solely to psychologically based studies. This misuse of millions of pounds of tax payers' money is an insult to ME sufferers and their care givers.

    Professor Malcolm Hooper lodged a formal complaint against the MRC PACE trial highlighting the dangers of such a study on ME patients. Sir Michael Rawlins, the chairman of NICE, is ultimately responsible for providing guidance on the appropriate treatment and care of people with specific diseases and conditions. He refused to even read the Report of Evidence [20] Professor Hooper sent him supporting his complaint.

    Sufferers of ME desire to know why the MRC is withholding files from the general public on ME that date back to 1988. These files are to remain closed until at least 2071, an extraordinarily long period for files that are of great significance to public health [21].

    A peer reviewed study by the Whittemore Peterson Institute(WPI) [22], recently published in Science, strongly links the newly discovered human retrovirus XMRV to a well defined cohort of ME patients. Why was a UK XMRV study by Imperial College London, involving psychiatrists, then quickly rushed through and given only four days for peer review? The resulting study was unable to find XMRV in any of the 186 samples, whereas the WPI study found XMRV in 3.7% of controls. Even if every patient in the Imperial College cohort had idiopathic chronic fatigue and not ME, if their testing had been done adequately they should still have detected XMRV in several samples.

    How can the Department of Health justify never having commissioned or evaluated any research on the relationship between ME and blood-related disorders? There have been well documented outbreaks of ME dating back to 1955 and there is the potential for transmission throug blood, organs and sperm. A Freedom of Information request revealed that the UK Advisory Committee on the Virological Safety of Blood discussed the need to screen blood for the infection that causes ME in 1991 - why was this never acted on? It is a fact that XMRV [23] is present in the UK as more than a dozen ME sufferers have already tested positive through VIPdx [24].

    The recently published findings from the All Party Parliamentary Group on ME [25] conclude that the government has given “insufficient attention to biomedical research.” To prevent further mistreatment and neglect of ME sufferers there is an urgent need for the government to recognise, manage and research ME as a serious disease. Until the government corrects its approach towards the diagnosis, treatment and research of ME, patients will remain vulnerable to coercion by doctors into potentially harmful GET and CBT programmes. Those severely affected remain at risk of being sectioned under the Mental Health Act, an inexcusable action which in Sophia Mirza's case hastened her death [26].

    Yours Sincerely,

    [FONT=Times New Roman, serif]
    References

    1. Myalgic Encephalomyelitis: [/FONT][FONT=TimesNewRomanPSMT, serif]My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation[/FONT][FONT=Times New Roman, serif].[/FONT]

    [FONT=TimesNewRomanPSMT, serif]2. Lynn Gilderdale 1977-2008 [/FONT]http://www.lynngilderdale.net/tribute.html
    [FONT=Times New Roman, serif]3. [/FONT][FONT=Times New Roman, serif]“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV” [/FONT][FONT=Times New Roman, serif]Nancy Klimas. One of the world’s foremost AIDS and ME/CFS physicians, Professor of Medicine and Immunology, University of Miami. New York Times, 15[/FONT][FONT=Times New Roman, serif]th[/FONT][FONT=Times New Roman, serif] October 2009.[/FONT]
    [FONT=Times New Roman, serif]4. [/FONT][FONT=TimesNewRomanPSMT, serif]Overview: [/FONT]http://www.mecfswa.org.au/UserDir/Documents/canadian_consensus_overview_me_cfs.pdf
    [FONT=TimesNewRomanPSMT, serif]Full document:[/FONT]http://www.mecfswa.org.au/UserDir/Documents/JCFS%20Canadian%20Clinical%20Case%20Definition%202003.pdf
    [FONT=TimesNewRomanPSMT, serif]5. Oxford Criteria [/FONT]http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/CFS Oxford Criteria 1991.pdf
    [FONT=TimesNewRomanPSMT, serif]6. Professor Simon Wessely, [/FONT][FONT=TimesNewRomanPSMT, serif]Institute of Psychiatry, King's College London[/FONT][FONT=TimesNewRomanPSMT, serif]and his peers including Michael Sharpe. See [/FONT][FONT=TimesNewRomanPSMT, serif]Illustrations of Wessely's Words[/FONT][FONT=TimesNewRomanPSMT, serif] pages 23-30 of [/FONT][FONT=Times New Roman, serif][/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif][/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=TimesNewRomanPSMT, serif]7. [/FONT][FONT=TimesNewRomanPSMT, serif]“[/FONT][FONT=TimesNewRomanPSMT, serif]The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME[/FONT][FONT=TimesNewRomanPSMT, serif]" [/FONT][FONT=Times New Roman, serif]Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe [/FONT][FONT=Times New Roman, serif]Occup Med 1997:47:4:217-227 [/FONT]
    [FONT=TimesNewRomanPSMT, serif]8. [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]The conventional wisdom is that illnesses are made real when they are legitimised by a doctor's diagnosis.....[/FONT][FONT=TimesNewRomanPSMT, serif] reinforcement of unhelpful illness beliefs can have an unhelpful effect on patients[/FONT][FONT=TimesNewRomanPSMT, serif]” [/FONT]
    [FONT=Times New Roman, serif]ME: What do we know (real physical illness or all in the mind?)” [/FONT][FONT=Times New Roman, serif]Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde. Referenced from [/FONT]http://www.meactionuk.org.uk/Quotes_from_Mike_Sharpe.htm
    [FONT=TimesNewRomanPSMT, serif]9. [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]The use of tests to diagnose the chronic fatigue syndrome should be done only in the setting of protocol-based research.......[/FONT][FONT=Times New Roman, serif]We consider a mental status examination to be the minimal acceptable level of assessment.[/FONT][FONT=Times New Roman, serif]" [/FONT][FONT=Times New Roman, serif]The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study. K. Fukuda[/FONT][FONT=Times New Roman, serif], S. Straus, M Sharpe et al Ann Int Med 1994:121:12:953-959[/FONT]
    [FONT=Times New Roman, serif]10. See [/FONT][FONT=Times New Roman, serif]ME/CFS causes death[/FONT][FONT=Times New Roman, serif] pages 15-17 of [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif]”[/FONT]
    http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=Times New Roman, serif]11. Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management. M Sharpe et al Gen Hosp Psychiat 1997:19:3:185-199[/FONT]
    [FONT=Times New Roman, serif]12. See [/FONT][FONT=Palatino Linotype, Palatino Linotype, serif]UNUMProvident Policy that underlies the MRC PACE Trial[/FONT][FONT=Palatino Linotype, Palatino Linotype, serif] and [/FONT][FONT=Palatino Linotype, Palatino Linotype, serif]The Woodstock Connection[/FONT][FONT=Times New Roman, serif]pages 60-62 [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical [/FONT][FONT=TimesNewRomanPSMT, serif]Medicine: How to make a disease disapp[/FONT][FONT=Times New Roman, serif]ear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=TimesNewRomanPSMT, serif]13. [/FONT][FONT=Times New Roman, serif]Illustrations of the effects of the psychiatric lobby’s dissemination of misinformation[/FONT][FONT=Times New Roman, serif]pg 83-85 [/FONT][FONT=Times New Roman, serif][/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=Times New Roman, serif]14. [/FONT][FONT=Times New Roman, serif]Comments of doctors to ME patients[/FONT][FONT=Times New Roman, serif]pages 85-86 of [/FONT][FONT=Times New Roman, serif][/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=TimesNewRomanPSMT, serif]15. In 2001 [/FONT][FONT=TimesNewRomanPSMT, serif]the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College, London[/FONT][FONT=TimesNewRomanPSMT, serif] tried and failed[/FONT][FONT=TimesNewRomanPSMT, serif] to unofficially change the classification of CFS and ME to F48.0. S[/FONT][FONT=Times New Roman, serif]ee also “[/FONT][FONT=Times New Roman, serif]Attempts to reclassify ME/CFS as a mental disor[/FONT][FONT=Times New Roman, serif]der[/FONT][FONT=Times New Roman, serif]” on page 53 of “[/FONT][FONT=Times New Roman, serif]Magical [/FONT][FONT=TimesNewRomanPSMT, serif]Medicine: How to make a disease disapp[/FONT][FONT=Times New Roman, serif]ear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=Times New Roman, serif]16[/FONT][FONT=TimesNewRomanPSMT, serif]. For a list of abnormalities seen in ME patients s[/FONT][FONT=Times New Roman, serif]ee pages 11-14 of “[/FONT][FONT=TimesNewRomanPSMT, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=TimesNewRomanPSMT, serif]” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=TimesNewRomanPSMT, serif]17. http://www.investinme.org/mestory0041.htm [/FONT]
    [FONT=TimesNewRomanPSMT, serif]1[/FONT][FONT=Times New Roman, serif]8. The MRC receives annual ‘grant-in-aid’ funding from Parliament through the Department for Business, Innovation and Skills (BIS)[/FONT][FONT=TimesNewRomanPSMT, serif]http://www.mrc.ac.uk/About/Factsfigures/index.htm [/FONT]
    [FONT=TimesNewRomanPSMT, serif]19. Pacing, Graded Activity, Cognitive Behavioural Therapy: a Randomised [/FONT][FONT=Times New Roman, serif]Evaluation. [/FONT]
    [FONT=Times New Roman, serif]20. The report entitled “[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif]” is a 442 page document prepared by Professor Malcolm Hooper in support of his formal complaint with regards to the MRC PACE Trial. [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
    21. Files on Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies, item code FD 23/4553/1, in the National Archives at Kew.
    http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=7&CATID=-5475665&j=1For further reading see The MRC's Secret Files on ME/CFS pages 44-48 of “Magical Medicine: How to make a disease disappear” http://www.meactionuk.org.uk/magical-medicine.pdf
    [FONT=TimesNewRomanPSMT, serif]22. The Whittemore-Peterson Institute for neuro-immune disease in Reno Nevada.[/FONT]
    [FONT=TimesNewRomanPSMT, serif]23. Xen[/FONT][FONT=TimesNewRomanPSMT, serif]otropic Murine leukaemia virus Related Virus, a human retrovirus.[/FONT]
    [FONT=TimesNewRomanPSMT, serif]24. [/FONT][FONT=Times New Roman, serif]VIPdx is licensed to use the WPI's protocols,[/FONT][FONT=TimesNewRomanPSMT, serif]http://www.vipdx.com[/FONT]
    25. [FONT=Times New Roman, serif]“As noted in the Gibson report, there has also been far too much emphasis in[/FONT]
    [FONT=Times New Roman, serif]the past on psychological research and insufficient attention to biomedical research. All Party Parliamentary Group on ME Inquiry into NHS Service Provision for ME/CFS published March 2010. http://www.meassociation.org.uk/images/stories/appg_final_report.pdf [/FONT]
    [FONT=Times New Roman, serif]26. Sophia Mirza died from ME in 2005. [/FONT][FONT=Times New Roman, serif]The Case of Sophia Mirza p[/FONT][FONT=Times New Roman, serif]ages 81-83 of [/FONT][FONT=Times New Roman, serif]“Magical Medicine: How to make a disease disappear”.[/FONT][FONT=Times New Roman, serif]http://www.meactionuk.org.uk/magical-medicine.pdf[/FONT]
    [FONT=Courier, monospace][FONT=Times New Roman, serif]and[/FONT][FONT=Times New Roman, serif]http://www.sophiaandme.org.uk[/FONT][/FONT]
     
  19. Mark

    Mark Acting CEO

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    Sofa, UK
  20. sproggle

    sproggle Jan

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    Teesside, England UK
    Please sign the following iPetition...

    A campaign letter requesting that the BBC Programme Panorama conducts an Investigation into how UK governments bodies mistreat and neglect sufferers is now hosted on iPetitions, please take the time to sign

    http://www.ipetitions.com/petition/meinvestigation/

    Thanks :hug:
     

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