'ME Community are happy to accept a total cut of funding...' Petition to sign

[Empty]

https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients

Have not seen this posted anywhere? Petition to sign...

"To: NHS England
NHS England cut the funding of GET and CBT for ME patients. Dear NHS England, in view of the current dire state of NHS funding due to Govt cuts, we the UK ME community are happy to accept a total cut of the funding that goes to GET & CBT treatment for ME patients.
Why is this important?

This will not only save the NHS millions but will save many thousands of people with ME untold harm and suffering and hundreds of premature deaths. CBT is a ‘scam’ therapy that is wasting vast sums of money... " (My bolding)

Already over a thousand signed....

 

[Cort]

https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients

Have not seen this posted anywhere? Petition to sign...

"To: NHS England
NHS England cut the funding of GET and CBT for ME patients. Dear NHS England, in view of the current dire state of NHS funding due to Govt cuts, we the UK ME community are happy to accept a total cut of the funding that goes to GET & CBT treatment for ME patients.
Why is this important?

This will not only save the NHS millions but will save many thousands of people with ME untold harm and suffering and hundreds of premature deaths. CBT is a ‘scam’ therapy that is wasting vast sums of money... " (My bolding)

Already over a thousand signed....

I like it!

They have studied that stuff to death! THanks. Even if it did work - why would it need more study?

 

[Cort]

I like it!

They have studied that stuff to death! THanks. Even if it did work - why would it need more study?

Do you have a URL for the petition?

 

[Empty]

https://you.38degrees.org.uk/petitions/get-and-cbt-are-dangerous-treatments-for-me-patients

That is all I have @Cort. Just noticed that it has been going over a year. I can't see why this will not gain thousands of signatures too with publicity...

 

[tatt]

the reason I haven't signed it is that the current ME service, bad though it is, is the passport to benefit payments for those that couldn't survive without them. I'm fortunate not to need this but it's a catch 22 situation for those who need benefit. I will campaign for alternatives and publicise the trial's deficiencies but wont help take money from the sick.

 

[Empty]

I don't see how sham CBT/GET centres would be a pathway to benefits? Especially since they deny that they make you worse, deny that the ongoing illness is physical and deny that you are still ill at the end after they have 'treated' you...

A better service would be proper advocacy and honest form filling help in terms of immediate practical support, trained G.P.s/Consultants who given the appropriate knowledge could actually be useful in form filling.

Also of course of immediate help would be M.E. testing centres to collect all of the blood anomalies/POTS probs etc as outlined on Dr.Hydes site. Proper testing available on the NHS to replace sham CBT/GET centres would by far be helpful both in potential cures for those who have been misdiagnosed and can actually be treated and for those with M.E. for objective evidence for claiming benefits in the long run...

I think it can be done now.

It could have been done decades ago.

 

[tatt]

the CBT/GET centres are staffed by people. They don't like to admit they are failing but sometimes they have to accept that people arent getting better. It's better than a gp saying it's all in the mind and not even doing a full assessment. Some of the centres even investigate thoroughly enough to find those who have other treatable diseases.

Nothing better will come along until PACE is even more thoroughly discredited.

 

[Empty]

I respectfully disagree tatt. The CBT/GET M.E. centres are staffed by robotic morons forcing unscientific dogma on unsuspecting victims. If they were closed, at least the money could go to real medicine, real testing, real science.

G.P should never be saying it is all in the mind. Full Stop. This is inherent sexism in the NHS. Stamp it out.

I also believe that nothing better will come along until funding is axed for these sham CBT/GET CFS centres and they are closed down. There seems to be a general fear of letting go of these centres because 'its all we have'. Not so.

I would ruthlessly close them down with immediate effect.

Then when patients say, there is no treatment on offer, there is no sham CBT/GET centres open to distract from that statement. If a patient with M.E. wants counselling, psychological help or even just to be told common sense advice, then they can ask for this at the surgery and go on a waiting list like any other patient, it should not be there as a default because you have M.E. and shipped off to psychological M.E. centres.



Which UK centres investigate patients thoroughly enough to find other physical diseases?

Just a differing opinion
Peace

Empty

 

[Seanko]

Hi @tatt @Empty
The petition itself is bit shrill. The Director of NHS England will receive hundreds of petitions from many patient groups for all kinds of illnesses.

Just as the PACE authors have overstated their claims, the petition overstates its.

Something a bit more scientific required?

 

[Seanko]

PS have look at this on "insider" & "outsider" campaigning.
https://knowhownonprofit.org/campaigns/campaigning/about-campaigning-and-lobbying/whatis/whatis

 

[tatt]

Newcastle http://www.telegraph.co.uk/news/sci...-one-third-of-patients-wrongly-diagnosed.html

Barts http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269106/

I'm sorry but if you think closing the ME/CFS service would result in the money saved being used for other investigation of patients you don't understand medical politics. It would probably be spent on other patients but possibly spent on psychiatric services.

 

[Empty]

NHS ME/CFS tap dancing centres deserve to be closed down because they are not fit for purpose and harm ME and CFS patients.

The voice of the petition sends a sharp alarm and its words are used to startle and engage the reader. Patients are usually calling for an expansion of current treatments or more of the same.....

So to say 'we the ME community are happy to accept a total cut in funding of CBT/GET centres' is a shocking statement to make.

It is only with deeper knowledge of the subject that you start to clearly see just how much wasteful funding is going on sham treatments.

Whilst it would be nice if they diverted all the doctors salaries and running costs of these expensive CBT/GET centres into biomedical research for M.E. or even testing centres for POTS and CT scans etc. I don't care either if they used it to send Doctors on more golfing holidays. I think the important thing, 'politically' and physically for the patients, is that it becomes ultra transparent that there is a serious lack of physical testing and no treatment.