Petition for Panorama Investigation, all signatures welcome!!

To support the following petition for a BBC Panorama Investigation into the governments misconduct with regards to the diagnosis, treatment and research of ME follow the link:

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

<style type="text/css"> <!-- @page { margin: 2cm } P { margin-bottom: 0.21cm } A:link { so-language: zxx } --> </style> For clarity this document uses only ME in reference to the disease Myalgic Encephalomyelitis. CFS in reference to idiopathic chronic fatigue. CFS/ME when referring to the attempts by psychiatrists to merge the two and redefine Myalgic Encephalomyelitis as a somatoform disorder (i.e. psychiatric).


[FONT=Times New Roman, serif]We the undersigned petition the Panorama Team to conduct an investigation into the conduct of The Department of Health, Medical Research Council[/FONT]and National Institute for Clinical Excellence <sup> </sup>with regards to the diagnosis, treatment and research of the neuro-immune disease Myalgic Encephalomyelitis (ME)<sup>1</sup> -the disease that affected the late Lynn Gilderdale.<sup>2 </sup>

[FONT=TimesNewRomanPSMT, serif]Why has The Department of Health allowed psychiatrists to dismiss a seriously debilitating,[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]3[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] potentially fatal disease as so called chronic fatigue syndrome? Why have psychiatrist[/FONT][FONT=Times New Roman, serif]s been allowed and even encouraged to monopolise both treatment and research of a disease? [/FONT]

[FONT=Times New Roman, serif]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) programs. When this approach fails to work, or results in further disability, it is the patient that is often blamed for failing to recover. [/FONT]

[FONT=TimesNewRomanPSMT, serif]The UK is a member of The World Health Organisation, which has defined ME as a[/FONT][FONT=TimesNewRomanPSMT, serif]neurological disease since 1969.[/FONT][FONT=Times New Roman, serif] The criteria for ME are best described by the Canadian [/FONT][FONT=Times New Roman, serif]Consensus Document.[/FONT]<sup>[FONT=Times New Roman, serif]4[/FONT]</sup>[FONT=Times New Roman, serif] Psychiatrists use their own vague Oxford Criteria[/FONT]<sup>[FONT=Times New Roman, serif]5[/FONT]</sup>[FONT=Times New Roman, serif] which[/FONT][FONT=TimesNewRomanPSMT, serif]requires neither myalgias or 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. [/FONT]

[FONT=TimesNewRomanPSMT, serif]The Wessely School[/FONT]<sup>6</sup> psychiatrists claim that ME does not exist<sup>7</sup>, that patients are in fact suffering from chronic fatigue syndromors should avoid legiti[FONT=TimesNewRomanPSMT, serif]misation of symptoms[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]8[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] and recommend that no investigations should be performed to confirm the diagnosis.[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]9[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] Despite well documented evidence to the contrary[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]10[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] in 1997 Michael Sharpe stated his view that [/FONT][FONT=Times New Roman, serif]Suicide is the only cause of death in CFS[/FONT]<sup>[FONT=Times New Roman, serif]11. [/FONT]</sup>[FONT=Times New Roman, serif]The Wessely School medical advisor's are influential in the UK benefits system and are in opposition to disability benefits being paid to CFS/ME claimants.[/FONT]<sup>[FONT=Times New Roman, serif]12[/FONT]</sup>[FONT=Times New Roman, serif]In [/FONT][FONT=TimesNewRomanPSMT, serif]1999 Michael Sharpe revealed his view towards CFS/ME patients by referring to them as the undeserving sick This campaign of misinformation[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]13[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] has led to some ME sufferers being dismissed as malingerers by their doctors and on occasion verbally abused.[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]14[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] There have also been [/FONT][FONT=Times New Roman, serif]attempts to have ME reclassified as a psychiatric disorder.[/FONT]<sup>[FONT=Times New Roman, serif]15[/FONT]</sup>

[FONT=Times New Roman, serif]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.[/FONT]<sup>[FONT=Times New Roman, serif]16 [/FONT]</sup>[FONT=Times New Roman, serif]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, such as Pituitary Disease.[/FONT]<sup>[FONT=Times New Roman, serif]17[/FONT]</sup>

[FONT=Times New Roman, serif]The MRC, funded by the DoH, is intended to be an independent body that supports research across the biomedical spectrum. With regards to ME, this is not the case. [/FONT][FONT=TimesNewRomanPSMT, serif]The soon to be published MRC PACE[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]18[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] trial, studying the effects of CBT and GET, is just one example of government funds going to solely psychologically based studies. This misuse of millions of pounds of tax payers money is an insult to ME sufferers and their care givers.[/FONT]

[FONT=TimesNewRomanPSMT, serif]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 [/FONT][FONT=Times New Roman, serif]on the appropriate treatment and care of people with specific diseases and conditions. He refused to even read the[/FONT][FONT=TimesNewRomanPSMT, serif] Report of Evidence[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]19[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] Professor Hooper sent him supporting his complaint. [/FONT]

[FONT=TimesNewRomanPSMT, serif]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.<sup>20</sup>[/FONT]

[FONT=Times New Roman, serif]A peer reviewed study, recently published in [/FONT][FONT=Times New Roman, serif]Science[/FONT][FONT=Times New Roman, serif], strongly links the newly discovered human retrovirus XMRV to a well defined cohort of ME patients. Why was a UK XMRV study, involving psychiatrists, then quickly rushed through and given only four days for peer review? [/FONT][FONT=TimesNewRomanPSMT, serif]The resulting study was unable to find XMRV in any of the 186 samples, when the Whittemore Peterson Institute[/FONT]<sup>[FONT=TimesNewRomanPSMT, serif]21[/FONT]</sup>[FONT=TimesNewRomanPSMT, serif] study found XMRV in 3.7% of controls. Even if every patient in the Imperial College London cohort had idiopathic chronic fatigue and not ME they should still, if their testing had been done adequately, have detected XMRV in several samples. [/FONT]

[FONT=Times New Roman, serif]How can the Department of Health justify never having[FONT=TimesNewRomanPSMT, serif] c[/FONT]ommissioned 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 the potential for transmission through 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<sup>22</sup> is in the UK as more than a dozen ME sufferers have already tested positive through VIPdx.<sup>23</sup>[/FONT]

[FONT=Times New Roman, serif]The recently published findings from the All Party Parliamentary Group on ME<sup>24</sup> 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. 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.<sup>25</sup>[/FONT]

[FONT=Times New Roman, serif]Yours Sincerely,[/FONT]


Full pdf version with references:
View attachment 747

Comments

Yes all are welcome, I will include a seperate total of UK signitures to show the amount of home support.
 
Sproggle, where exactly do I sign up. I can't find a way to sign the petition.

Thanks,

vdt33
 
Sproggle,
I think that what you are trying to achieve is a great idea, but it isn't obvious / clear what people have got to do to sign up to your petition.

I'm also not sure what this bit of the petition statement means :

"chronic fatigue syndromors should avoid legitimisation of symptoms". :worried:

It's important that your petition is worded carefully, otherwise it loses some of it's credibility.

Good luck with it - I will certainly be adding my name to the list ! :D:Sign Good one:

Regards,

TGOP
 
Hi TGOP

the bit that you quoted is an error - the full text in the pdf version reads: "The Wessely School6 psychiatrists claim that ME does not exist7, that patients are in fact suffering
from “chronic fatigue syndrome” a somatoform disorder (i.e. psychiatric). They insist that doctors
should avoid legitimisation of symptoms8 and recommend that no investigations should be
performed to confirm the diagnosis."
Hope this is clear.

To sign the petition send your name and location to:
meadvocacyalerts@googlemail.com

cheers,
Nicky
 
Hi again Sproggle,

I think that you might find something like this useful for hosting your petition.

http://www.gopetition.co.uk/

My feeling is that people will feel more comfortable submitting their details to a well known petition hosting site than sending them to the Email address you have provided. :thumbsup:

Regards,

TGOP :victory:
 
Thanks everyone for your comments

TGOP that error must have occured when I copied &pasted, looks like part of a sentence was deleted. As Nicola said it reads differently in the pdf version. Not sure if I can go back and alter my post now...

That site looks great, not sure what I'd do with the 100+ signitures I've already got if I started to use this tho??

Jan
 

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