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Request from today. "Do you know how I can find the oxford Brooks research that NICE asked for with regards to children?" Is it shown in the cited reference section and graded in terms of evidence?

Scottish Parliament Wednesday 26 August 2020 Public Petitions Committee Myalgic Encephalomyelitis (Treatment) (PE1690) https://www.parliament.scot/parliamentarybusiness/report.aspx?r=12776&mode=pdf Very well done Emma Shorter MEAction Scotland

https://www.strathallantimes.co.uk/news/national-news/18795240.long-covid-four-different-syndromes---academics/ 'Academics said that more work is needed to help those who are suffering as they said that many are “not believed” when they seek help. Ongoing symptoms can include breathlessness...

Speaking of costs.-in the last NICE Guideline 2007, there was a costing table for patients (linked to the likely patient tariff system) of a typical service cost. I will look it out. Is there any mention of costing in this guideline? ( I must confess I haven't even read it due to other...

A little backtracking and history here-and a pointer that we need to interrogate and understand the processes which result in 'People and Teams' & NICE, if things are to work in our favour...... 'NHS People and Teams' (ie the remaining remnants of the ME Services roll out in 2004) - (some...

Don't bother- lightweight...

Tomorrow https://www.rsm.ac.uk/resources/rsm-live/ https://www.rsm.ac.uk/events/rsm-studios/2019-20/pen65/ We invite you to join us as we continue the COVID-19 series. Tune into our free, interactive webinars to keep informed and stay connected with health professionals, leading experts and...

Adolescence for many is a trial! Being down depressed challenged etc is all part of a 'normal typical adolescent journey'..... at least that was my 30 years of profession experience working with challenged young people in a Referral Unit. Most came through the PRUs eventually remarkably well...

Thanks for the clarification! I am on acronym overload it appears......

Derek P is sound as a bell as are the Biobank team representatives. Looks to me a case of good intentions being allowed to stray off piste...... Isn't this an Invest in ME initiated project? If so, why are they not knocking this into shape if there are concerns? Perhaps they are behind the...

http://www.virology.ws/2019/12/02/trial-by-error-professor-jonathan-edwards-view-of-me/

Sent to me by very supportive patient advocate for ME and CFS in Norfolk for nearly 40 years Dr Patrick Thompson ! "There is a mismatch between research questions which are considered to be important by patients, carers and healthcare professionals and the research performed in many fields of...

It's clear I should have read this in more detail!.........

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5301046/ Reads rather well

This is an important questionnaire with data requested by the NICE Guideline development Group and chair Dr. Peter Barry. This request is to address the issue of the Severely Affected who have to date been marginalised, and whose collective voice has not been heard. I intend to contact Keith G...

Have capture the questionnaire off the web for pre filling in on line.

I know that a paper version to prepare in advance before an upload should exist and should be made available. Most SA are both too physically and cognitively challenged to cope with on online only!

:hug::hug::hug::hug::hug::hug::hug:

How about an adapted version of the Canadian 'Symptom' scoring chart? It could be used effectively as a kind of audit trail over time. A high score would mean significant impact on daily living and QOL scores. Used; 1. Before diagnosis, 2. After Diagnosis and intervention 3. Ongoing over time -...

Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms. The terms subjective, nonspecific, and vague can be used inaccurately. Conversion disorders, functional disorders, psychogenic illness, factitious disorder imposed upon another...