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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Medically unexplained symptoms, somatoform disorder, and compensation neurosis are outdated and/or inaccurate terms.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...

Emily also has 'Sharpee Syndrome'....prone to block unwelcome tweets and cannot discuss genuine concerns raised....

For Advocates, (especially formal or paid ones) surely the first requirement is; Are we talking Advocates or advocates? When dealing with Statutory services; 1. Advocates: to know and understand the legislation and legislative framework and person's entitlement. 2. Know what statutory guidance...

:emoji_clap: So sorry to hear of your loss, and sympathies over the pressure you are under; it makes the project all the more special and powerful.

1 remember finding this very useful. Carol Sieverling Carol Sieverling of the CFS & FMS Support Group of Dallas-Fort Worth wrote this article based on transcripts of another member's visit with Dr. Paul Cheney, transcripts of a presentation he gave at a conference in Orlando in October 1999...

We would be happy to upload these to our GP Training Resource page and material? GP Awareness http://nandsme.blogspot.com/p/blog-page_23.html 1. It could go with a statement that this is a "trailer"/ "preview to the bigger project. It will be superceded as and when. 2. It would nip in the bud...

Will do. Thanks!

Thanks Natalie. We had an event on the 11th September where ME and CFS training was on the agenda. I heard late in the day from Shelley Mitchell, (below), that "it was actually the CCG that had changed the agenda for the 15 session and talk. It didn't happen as planned, but was still very...

I too am delighted to have these short sharp and snappy.... pithy too! Will suggest that Suffolk GP 'Down Day' and Training consider applying for use of them to be shown. Natalie, can you let us know how we may arrange that?