NICE are NOT going to publish the new guidelines tomorrow

Rufous McKinney

Rufous McKinney

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Countrygirl said:
If the Round Table does not reach the desired outcome with full publication of the new guidelines, Forward-ME and our members will take every possible step to ensure the final guidelines in their current form are published in full. P
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so whats really going on with this- there are ME clinics which presumably are staffed by psych and Physical therapists.

If GETS and CBT are no longer offered as treatments, does this mean those faciliities close and those paid staff are laid off?

so they are all objecting to losing their jobs?
 
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andyguitar

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BrightCandle

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Rufous McKinney said:
so whats really going on with this- there are ME clinics which presumably are staffed by psych and Physical therapists.

If GETS and CBT are no longer offered as treatments, does this mean those faciliities close and those paid staff are laid off?

so they are all objecting to losing their jobs?
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Exactly this, this is precisely what needs to happen. These people aren't the right people for researching into a biological condition so they become completely redundent. It is the right thing to do, their treatments don't work and cost money and its better placed elsewhere. There are hundreds of these clinics across the country and they all need to close because they aren't equipped for dealing with the actual disease they are meant to help.
 
nerd

nerd

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Theoretically, there's still a lot of work to do with ME patients. Some of it also to help coping with the condition. But these ME clinics are obsolete indeed. Other clinics can be opened but they won't need this amount of psychological staff. I'm sure their employees will find new jobs in no time. Depression has become such a frequent condition during the pandemic, and also a general phenomenon due to how society drifts away in the "fake" cyberspace of social media. It's out of question that the market for professional psychological help is undersaturated and that waiting times are too long. These experts can finally find a target group that appreciates them and that can be helped with CBT. It's a win-win situation for everyone but the insurance companies.
 
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livinglighter

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Dr Sarah Myhilll has started a petition calling for the immediate withdrawal of the old 2007 NICE ME/CFS guidelines.

Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53
https://www.change.org/p/the-national-institute-for-health-and-care-excellence-nice-call-for-nice-to-withdraw-its-current-me-cfs-guideline-cg53?utm_content=cl_sharecopy_30539566_en-GB:8&recruiter=1224171280&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition&utm_term=G>Search>SAP>UK>Brand>All-Match_Types
 
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Bronc

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BrightCandle said:
Exactly this, this is precisely what needs to happen. These people aren't the right people for researching into a biological condition so they become completely redundent. It is the right thing to do, their treatments don't work and cost money and its better placed elsewhere. There are hundreds of these clinics across the country and they all need to close because they aren't equipped for dealing with the actual disease they are meant to help.
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I completely agree. I had 2 rounds of 'treatment' at the West Yorkshire ME clinic and got much worse while trying to comply with their psycho social babble. I kept being told that I had to take a more positive outlook on my illness and that negative beliefs about my illness could make me worse. I was struggling to stay in part time work. I eventually ended up taking early retirement after making every effort to comply with their 'treatment'. I recall being given large A4 booklets to read at the end of each session. How ironic.
One neurological OT from the local hospital told me in exasperation that as my illness was not responding to CBT I needed to consider counselling for childhood trauma. Apparently, this was behind my illness getting worse!
 
Pyrrhus

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BrightCandle

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Its pretty clear to me that NICE and the NHS are a lost cause unfit for the modern world. All patient representatives should be withdrawing from the roundtable and future protest and should prepare for a legal fight against the NHS, this is obviously where this is going so may as well get started.
 
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Bronc

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ME Action and the ME Association are talking up this new guideline that basically takes us back to the situation in 2007 before the era of GET/CBT.

We have a Tory government that is hell bent of privatising the entire NHS which will only make the standard of care worse while huge amounts of money are being swallowed up by private companies. Decisions about local NHS services are made by unelected CCG’s that are distant and remote from ordinary people. It is against this background that we are supposed to believe that services for pwME will improve because of this new guideline.

The new guideline is lacking on so many fronts.
Where is the commitment to train doctors and all health professionals so that they are up to date with the latest scientific research on ME?
Where is the commitment to massively increase funding for biomedical research into ME?
After all, the current Tory government has pans to increase the pressure on disabled people to get back into the world of work.
Howw ill the new guideline help pwME navigate our punitive benefits system? An FOI request that I put into the DWP revealed that nearly 50% of pwME were having their applications for ESA turned down.
 
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