Hi everyone!!

I know an update has been looooong overdue.  I am very sick and I struggle to do everything that I wish to.  But I haven't done nothing - just was not able to keep you all informed!  

I sent our petition to NICE in February 2019.  Armed with fresh new evidence, I did so again in June 2020.  Here's the latest letter if you'd like to see it - the evidence contained within may be useful for your own fights against the system:  NICE petition June 2020

I received this reply from their Chief Executive, Professor Gillian Leng:  "Robin, Many thanks for alerting us to these new systematic reviews. I’ve copied in Paul Chrisp, in case he isn’t already aware.  Kind regards, Gill"

In July, just a couple of weeks after my letter and with Covid-19 upon us, NICE was finally persuaded to do something!  It was so heartening to see this warning slapped onto its current guideline, "NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID‑19.  Please see the guideline in development page for information on our update of this guidance, which will include reviewing the evidence on GET.", and this statement warning against GET for Covid-19:  GET statement  

GOOD NEWS.  On 10th November, NICE released its new draft guideline for ME/CFS.  GET and CBT (the bad kind) is completely removed.  Along with any exercise programmes meant for healthy people or people with other diseases, blanket advice to "exercise more" or "go to the gym", and Lightning Process!  Hooray!!!

(jump up and down)

We can celebrate.  Hell we deserve it!  But our work is not done.  Get it right, and we can celebrate even more later. 

HOME RUN.  We need to hit that home run.  Here's what you need to do.  Read my comprehensive response for the guideline consultation.  HNG guideline comments  If you can't manage all of it, just read the sections that have green or blue bits.  Then, let's lots of us show this is what we want so NICE will listen.  This is how. 

(If, however, you have concerns regarding the content, I am clarifying below.)

Support my proposals by: 

1.  Passing the document to Stakeholder organisations.  Ask them to please support the service reconfiguration and medical education parts.

2.  Smaller organisations that are not registered Stakeholders with NICE can add their names to mine for a joint submission - email:  RColourMusic@hotmail.com

3.  Prominent individuals also.

4.  Other individuals make your own submission - feel free to use mine and modify to suit.  (it does need a bit of tidying up)  Send your submission to:  cfs@nice.org.uk 

If we all ask for the same things NICE will be more likely to listen.

Some people are concerned about the proposals for service reconfiguration, so let me clarify:

• Physicians and Paediatricians are Consultants.  The term "Physician" includes all adult Specialties that are not Surgeons, Anaesthetists or Psychiatrists.  Such as Cardiologist, Immunologist, Rheumatologist, etc.  So we can still have a Consultant led service.  If it makes you more comfortable, go ahead and drop the word "GP" from this.  However, I think including them increases the pool of people who can take the lead on the new community based services that we (myself and several other doctors including Dr. Nigel Speight) propose, speeding up the transition process, and getting rid of unwanted specialist centres more quickly.
• Making GPs responsible as well forces them to learn.  Trust me - when you know something is YOUR responsibility, you will learn about it!!  They can no longer just palm you off to a "specialist" and wash their hands of you, blindly following what the "specialist" tells them.  Now if they get it wrong, it's their neck.
• My proposals on MEDICAL EDUCATION will ensure that GPs and local Consultants will know the basics on diagnosing and managing ME/CFS.  I know we want more than just the basics, but let's get the basics right first!  Remember at present most GPs and local Consultants still think we just need exercise.  And in order to have that wonderful "specialist" we all dream of, who knows how to treat orthostatic intolerance, do CPET tests, check our genetics or immune responses, check for and treat Ehlers Danlos, cervical instability, Mast Cell Activation etc., we first need to train up ALL Physicians on the basics because this is the pool from which an ME/CFS specialist will emerge.  So please support my proposals on MEDICAL EDUCATION. This is so important.
• I know there are some good specialist centres.  If these are run by Physicians and not Psychiatrists, they can still be kept, just reorganised to be community based.  (i.e. that favourite Immunologist can still treat you - with or without that CFS clinic.)  BUT we must ask blanketly for the system to be scrapped, so that we can get rid of widespread, entrenched, unsavoury attitudes and practices.  These will not be easy to change otherwise.  So many of us are worried about "the same thing under a different name".  Well the only way to be sure this doesn't happen is to remove the people who will do it!

There are over 11,000 of us here.  Let's make it very clear to NICE that we want the current system scrapped in favour of responsive and adequate community based services, and we want our doctors educated!!

Yours truly,

Robin  more about Robin

Sign petition here