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Yes indeed. Which is why there is no speculation as to the reason for the change on the Service Development website post mentioned above.

Just to add a personal note on this. I saw Dr Nacul through this service. The medical review was very thorough indeed, with regular followup planned. I was greatly impressed. In addition, Dr Nacul clearly has a great deal of respect for the knowledge of his patients regarding their ME. The...

@Hutan , thanks for your interest. No it's not a matter of money. For years Suffolk has used the Individual Funding Request process to finance care for some patients with ME, and this has continued with Dr Nacul's service...

Merged thread Specialist ME Clinic for Moderate & Severe patients in Suffolk suspended Last week Suffolk CCG's contacted the Patient / Carer Group to let us have the incredibly disappointing news that the additional service set up last year and led by Dr Nacul is to be suspended...

Thanks @Peter Trewhitt . I wondered if I'd missed something obvious, as surely whoever wrote the briefing must have anticipated that the training material would be subject to increased scrutiny.

What I don't understand is why Brine would mention the RCGP training material in the first place. Did he or whoever wrote the statement genuinely think that drawing attention to this material would offer any reassurance to PWME, especially in the light of the trashing of PACE, rewriting of the...

Yes @JaimeS ....madness. I think their implied rationalisation was that it was my fault that my illness had become chronic as in their view I was unlikely to engage fully in the "optimal treatment" of CBT/GET.

In their claims management diary (obtained under the DPA, they never expected me to see it) my insurer said something to the effect that my ability to understand the issues involved and to pursue my claim was evidence that I wasn't as ill as I said I was... A no win situation. (and not unlike...

I don't think so.

Another installment in the lengthy process attempting to improve service provision in Norfolk and Suffolk. The Joint HOSC has requested a great deal of information from both the CCG's and the provider of the service ECCH. The report written by the Joint HOSC in preparation for the meeting and...

Interesting discussion. I use zopiclone to initiate sleep, only a low dose between half and three quarters of a 3.75 mg. tablet. Occasionally I push the boat out and take a whole tablet when I am particularly tired. It doesn't necessarily improve my sleep throughout the night though and a...

Yes, noticeable in the local news here (East Anglia) "activist" is usually used positively; relating to battles against injustice be it health care inequalities, social care, community issues, in education, with the DWP etc.

I'm wondering if this tweet is deliberately provactive.

As well as providing real-time data on heart rate during activity the monitoring is also useful on a long-term basis to identify patterns. If you use Excel or Google sheets the data can be graphed and compared to your hearts content. If you also measure heart rate variability this provides...

@Barry I think that in this instance the patient means access to the appropriate level of specialist care. This may include medication for symptom control and and advice for the patient's GP. It's worth noting that the NHS is very hierarchical and GPs and other specialist are much more likely...

It is unclear how Norfolk and Waveney are listening to the views of patients as they claim when they have passed over an opportunity to commission biomedical care from a highly respected clinician. Not only that service from the current provider east coast community health has been reducing...

Text of the start of the article:

As you may recall Suffolk NHS have begun to commission care from Dr Nacul (who leads the ME Biobank team at LSHTM) but commissioners from Norfolk and Waveney could not agree on a way forward. Norfolk patients are understandably unhappy about this. There is an article in today's Eastern Daily...

For anyone interested in the background to the service development process you can find more information here: http://nandsme.blogspot.com/p/the-story-so-far.html?m=1 The community service is currently led by an occupational therapist, with only GP involvement if there is a query over...

Involved in the Service Development process were 7 CCGs, the Provider ECCH, and the Patient / Carer Group. The NHS required that a cost neutral solution be found which Dr Nacul delivered in the feasibility assessment. Then the Provider discovered further costs not initially disclosed. In...