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NB Slightly off topic but material! I have contacted Simon's programme manager regarding the proposed GP Fellowship issue flagged up at Investing ME conference. ........ Simon needs to know that some CCGs are not to be trusted,...... ( and these leopards rarely change their spots, if you GET...

The question could be are the Quadram Institute tracking quantifying where gut/digestive problems can lead to development of significant other symptoms/comorbidity in patients with moderate -severe ME diagnosis?

Male- Diagnosis of ME- 2006- complex comorbidity- or more of the same? patient with gastrointestinal problems (intolerance- usual ones, but not confirmed Coeliac) allergy inflammation including gut problems thyroid/adrenal presentation but 'normal' on tests ( NHS) but not on adrenal saliva...

They just hire rooms.......as and when......often not ME suitable ....

https://www.ecch.org/your-health-1-1/me-cfs-team/ NOTE 6 CLINICS in 'STP' are a Norfolk and Waveney and I in Suffolk!!!!!

I am collating patient experiences of East Coast CH and will post any feedback from the "new" clinic which provides better access, not better services for those in North Norfolk. I have been collating info on the service limitations and insufficiency which we will use to issue a formal joint...

Another good comment piece from Jerome- elements which sounds decidedly familiar! "..... medical counter-reformation playbook. First, keep it personal – identify, belittle and denigrate the critics.........(some) experts emphasising their credentials (...whilst belittling others) "...

In response to a thread elsewhere talking about Jen's condition pathway and the attendant implications for both patients/families and NHS services, I wrote "The other significant factor is her (Jen's) initial acute problem (in addition to her ME/CFS diagnosis) and diagnosis of thyroid...

In 1997? Eithne Leming ( a local LEA Officer) came across lots of children with ME and other chronic long term health needs so she set up a Special Child Course and so our Suffolk Support Group was formed;... Eithne was blessed with a special insight as one of her own children had a diagnosis...

Trading Standards ...........??? LP, or RT http://www.reverse-therapy.com/ http://www.reverse-therapy.com/ or MT Mickel Therapy......... A radical new approach to recovery Reverse Therapy is a simple educational process that teaches people to identify the triggers which prompt the...

They said from the outset that it was needed for people providing input into education, but would RCP/NICE would not consider securing a professional who was involved in that capacity.....( like me!)

Investment in our 'US goose' that hopefully will lay a golden egg of truth! Despite Reuters KK and MS trying to 'kill the goose with their short-sighted attempts at destruction of a valuable resource,.... their unprofitable actions motivated by self aggrandisement? , greed? ..... personal...

Many thanks. I have struggled to get a workable link!

Healthwatch Lancashire have published and update on the Trafford ME National Survey ( 2015 and 'ongoing') which was issued during 2017. This should be useful for NICE..... As Healthwatch are NICE stakeholders for the ME review. It would be good to get the survey replicated across all...

Surely we should look to what personalised, palliative care approaches bring to this situation? That in effect is what is required for the severely affected. A management and oversight that flexibly responds to the situation as it presents itself? Similarly a contingency for acute needs at any...

Missing Millions Norwich!

"Mostly without treatments, if we could just get a handle on not making us worse, that would be a big step. One big one for me was home visits. In my case, because I was on Coumadin, years of office visits to check INR took a HUGE toll on my functional capacity. Once I switched to a doctor who...

This is what we had in East Anglia until 2006/2007 and this is what was lost...... This is why we are continuing the fight for re reinstatement of the service model developed by the Late Dr Terry Mitchell to help the severely affected. I believe Dr Paul Worthley also has a similar appraoch and...

But I am worried about it or I wouldn't be posting about it! Just revisited the Scoping brief in case my mind was playing tricks on me! 2 issues. https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-scope "So as to who the Guidelines are for:" see below but, Then I spied this...