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Any thoughts on this please?

Emma Lewell - Buck:
"the sparse funding for ME research, which at presentstands at a pltry ยฃ1 for every sufferer."

Sharon Hodgson:
"The Government do not fund research and clinical cre for people with ME at the rate they do for other serious prevalent diseases"..."the average spent on researh for a person living with ME is just ยฃ1 a year"

Http;Hansard.parliament.uk/Commons/2019-01-24/d...

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Any thoughts on this please?

(1) Tuller D. Trail by error: the troubling case of the PACE chronic fatigue sundrome study. Virology Blog 2015
Www.virology.ws/2015/10/21/trial-byerror-i (Accessed 28 September 2016)

(2)Hooper M. Magical Medicine: how to make an illness disappear. February 2010.
Http://www.mectionuk.org.uk/magical-medicine.pdf (accessed 28 Septemer 2016)

(3) Goldin R. PACE: the research that sparked a patient rebellion and challenged medicine. Stats.org 21 March 2016. http://www.stats.org/pace-research-sparked-pati... (Accessed 28 September 2016)

(4)Kindlon T.Reporting of harms associated with graded exercise therapy and cognitie behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME 2011;19(2): 59-111
www.ncf-net.org/library/Reporting%20of%Harms.pdf (accessed 29 September 2016)

(5) https://hansardparliament.uk/Commons/2018-02-20...

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Any thoughts on this please?

Please do not deny that Graded Exercise has harmed people. It is true, as you say, that some people believe it is helpful. However many do not believe so.

There are many criticisms of the PACE trial. It was done unblinded. There were no objective measures. Mid trial the PACE investigators changed their protocol methods of assessing their primary outcome measures of fatigue and physical function. The investigators provided no sensitivity analyses to assess the impact of the changes and have refused requests to provide the results per the methods outlined in their protocol. The PACE investigators based their claims of treatment success solely on their subjective outcomes. They violated their promise in the PACE protocol to adhere to the Declaration of Helsinki, which mandates that prospective participants be adequately informed about researchers possible conflicts of interest. The main investigators have had financial and consulting relatinships with disability insurance companies, advising them that rehabilitative therapies like those tested in PACE could help ME/CFS claimants get off benefits and back to work.They disclosed these insurance industry links in The Lancet but did not inform trial participants, contrary to their protocol commitment. This raises concerns about whether the consent obtained from participants were legitimate.

Dr David Tuller has written about futher problems with PACE in lots of detail in his Trial by Error blogs (1). This can be found at www.virology.ws/2015/10/21trial-by-error-i/

Virology Blog(1): "This re-analysis demonstrates that the previously reported recovry rates were inflated by an average of four-fold, Futhermore, in contrast with the published paper by he trial investigatoes, the recovery rates in the cognitive behavioural therapy and graded exercise therapy groups are not significiantly higher than with specialist medical care alone."

More criticisms of PACE have been made by Professor Malcome Hooper and Countess of Mar can be found at www.meactionuk.org.uk/Update-on-the-PACE-Trial-...
and in the paper Magical Medicine:How to make a disease disappear (2)

Rebecca Goldin offered her criticisms here (3) and mentions that "How can we generalize to the patients with ME?CFS who are too sick to travel to the hospital, if all PACE participants are able to attend hospital visits?

How do we contextualze major changes in protocol impacting resuls, and the unwillingness of the PACE authors to provide outcomes based on he initial planned data analysis? Do these changes impact patients in particular branches more than in others, biasing the study's outcomes?"

The evidence of harm of CBT and GET to ME sufferers has been documentted by Tom Kindlon and can be found here: www.ncf-net.org/library/Reporting%20%20Harms.pdf.

Carol Monaghan: " PACE trial, which relied on patient self-reporting, rather than measureable physiological parameters. Furthermore, when the results were not a expected, rather than revise the orignial hypothesis, the investigators simply changed the success criteria. Thus patients participating in GET who had deteriorated during the study were considered recovered. There are, of course, ways of measuring the physiological impact of exercise. The two day cadiopulmonary exercise test onjectively measure post - exertional malaise"..."a person with ME can perfrom adequately - sometimes even well - on the first day, but can have greatly reduced cardiopulmonary function on the cond. The test requires the participant to exercise on a static bicycle, and allows data on xygen consumption, workload and gas exchange to be measured. The identical tests, seperated by 24 hours, must be carried out to properly mesure the impact of exercse. Results from a single test could be interpreted as a lack of fitnes. Two tests change that to something quite different. A healthy person will perfrm better the second time; as ME sufferer will most likely be worse."..." One wonders why the DWP would fund such a trial, unless it was seen as a way of removing people from long-term benefits and reducing the welfare bill."(5)

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Any thoughts on this please?

Hi helpbot would u like some of my biscuits? Can you make me a coffee first though?

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LYRICS for THE TRUMP DEATH CLOCK

This poem is brilliant btw
I dont have much of an opinion on the politics of it/covid but the way with words and rhyme is amazing

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LYRICS for THE TRUMP DEATH CLOCK

BA1 wrote:

Trumpsters are still extremely upset that Hillary lost. Go figure.

???
(Looks around. Reads again.)

Trumpsters. are. still. extremely. upset. that. Hillary lost. Go figure.

.....???......
I didn't know about that, but I'm certainly still hearing this after nearly four years.
๐Ÿ‘‡๐Ÿ‘‡๐Ÿ‘‡๐Ÿ‘‡๐Ÿ‘‡

https://youtu.be/wDYNVH0U3cs

That reaction was kinda like mine the other day after talking with the dr ๐Ÿ˜…

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Please sign petition!

Signed.

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Advice of the day!...

Im alright thanks im just saying in general

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Advice of the day!...

Depressoon is not an attractive thing but thats why people dont tell people how they feel and go kill themselves

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Advice of the day!...

Its true that men cant rely on other men. But i think we can rely on God.

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