Search results

Some very useful comments and observations here. I would like to add a few more from our experience Suffolk with Dr Nacul. http://nandsme.blogspot.com/p/the-story-so-far.html In effect I would like to defend him regarding the Livestream. Some of you will know the gist but it is useful to repeat...

Initiative ended in a report - then preceded CureMe Biobank and LSHTM involvement.

Not Healthwise Adam, Healthwatch. Trafford https://www.healthwatch.co.uk/news/2017-11-16/tired-explaining-experiences-people-chronic-fatigue-syndrome Lancashire https://healthwatchlancashire.co.uk/wp-content/uploads/2014/06/REPORT_ME-CFS_June2017.pdf

http://nandsme.blogspot.com/p/patient-survey.html All Party Parliamentary Group on ME In March 2010 part of our survey was included in the All-Party Parliamentary Group on ME 'Inquiry into NHS Service Provision for ME/CFS' (p6). The APPG commented on page 8 of their report: 'While the APPG...

http://nandsme.blogspot.com/p/patient-survey.html Survey Evaluated by leading ME researchers and doctors; Dr Pheby, Dr. Derek F. H. Pheby, BSc, MB, BS, LLM, MPhil, FFPH, is a Visiting Professor of Epidemiology, Buckinghamshire New University, Wycombe, England, United Kingdom. He served as...

Interesting tweet...perhaps we should send it to Bath....... Marcus Munafò Retweeted Guillaume Rousselet @robustgar · Aug 29A reminder that the Declaration of Helsinki makes pre-registration mandatory: 35. Every research study involving human subjects must be registered in a publicly...

Actually, I found the booklet quite 'neutral and uncontroversial! It is better than I was expecting.....

10 years ago......... https://www.telegraph.co.uk/news/health/news/6691695/Ban-chemical-linked-to-cancer-in-baby-bottles-campaigners.html "In a letter to Andy Burnham, Health Secretary, leading scientists said the use of the chemical Bisphenol-A, in baby's bottles and other products used to...

I asked the awkward squad question on public confidence and contaminated blood N V CJD.......... Correction 1 05 into session! https://www.thersa.org/events/2019/07/our-future-in-the-land Our Future in the Land Tuesday 16th July 2019 at 18:00 - 19:15 The Great Room, RSA House Tagged with...

A big thanks to MEA and especially to Russ..... Have sent to my son, now 35 and has been grappling with this 21 years. You have articulated so well his predicament made worse by his being ill as a child and never finding himself and finding an identity in the adult world. He is asking how does...

He was a neighbour wrongly diagnosed with ME. Double double, toil and trouble, round about the cauldron go. In the crushed brains and spinal cord throw, thalamus, spleen, and tonsils also, then cool it with tainted Blood, Well done, for we shall gain a greater Profit to share with the farmers...

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...