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Re: Dr David Strain It was reiterated many times that he is not a “CFS” expert but a Physician with an interest in “CFS”. Why then is he coordinating the E-Learning 3part course for NHS? I have seen a few comments on the first part saying PEM /PENE not mentioned. Is this the case? Surely...

Final brief impressions: Sarah and Sean raised good points. A Regulation 28 report will be drafted and directed to DHSC, NHS England and NICE. It will probably be ‘cc’d to other parties including those outlined by Sean in his submission. We don’t know who those are but he mentioned the...

A very brief overall impression up to the break Dr A Helmsley (AH): He is very clear that nowhere in NHS or privately in England are there any commissioned services or beds. This needs tackling at the highest level of NHS and Government. He stated that ‘l don’t believe there are any specialist...

Listening online now. 132 guests. Sean issued a late statement that had not been circulated. Pause in proceedings whilst everyone receives a hard copy to read.

@Karen Hargrave Welcome and thank you for #ThereForME. I am hopeful that this will make a difference. The media work has been excellent. Wishing you and James all the best. X

Pasted tweet from Oonagh Cousins here: Due to the influx of support from healthcare professionals after the #ThereForME open letter was published, we're compiling a second list of signatories! Please note we are looking for *UK-based HCPs* There is a link for a Google docs embedded in...

Diagnosis and management of OI in MECFS. (2022) Video description: Cardiologists Professor Frans Visser and Dr Linda van Campen explain all about Orthostatic Intolerance in ME/CFS. This webinar was organised by the Irish ME/CFS Association and the Irish ME Trust. Been a while since I...

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421 Just placing the 2015 article here (has the often used chart comparing different diseases) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Michael Falk...

@Adam pwme aka Broken Battery doing great work putting threads together speedily with free links to articles and YouTube clips of radio interviews. XTwitter and FB (that I’ve seen)

https://www.efna.net/survey2024/ A new survey: The Invisible Issues of Neurological Conditions Ends 30/8/24 Easy survey and very relevant to ME.

Yesterday Action for ME gave a reply on XTwitter regarding a query about the APPG “We have already sent briefings to parliamentary candidates & will be directly contacting Secretaries of States and Shadows of the following departments: DHSC, DWP and DSIT, once the positions are announced We...

Direct link to same page https://www.europeanmealliance.org/emea-who-message-imecw2024.shtml

25% believe they are complying

Video less than 2 minutes

❤️ Brilliant

https://simonwessely.com/ Sorry if I have missed someone else posting this. There is a statement page on entitled “CFS personal story”.

@Aspen this matches my experience. No classic cold symptoms such as cough, sore throat and runny nose. Although the ME flares up and I get a strange sensation in the face as if a cold is trying to break out. Numerous bugs brought into the home including Covid by family, we have 4 grandchildren...

https://public-health.meduniwien.ac.at/unsere-abteilungen/abteilung-fuer-primary-care-medicine/ueber-uns-einblicke-in-highlights-der-abteilung/webinar-on-neurological-aspects-on-me/cfs/ International webinar on neurological aspects of ME/CFS Date: 1st of March 2024 Time: 15.00 - 18.40 pm...

Read the comments on the NIH intramural study whilst giving blood for the Blood factors study at Sheffield. Met Caroline and Audrey and had a good conversation. I am encouraged by what they are doing.

Straight in at 2ATM? MS HBOT centres ease people in at 1.5ATM (equivalent to 16 feet depth) for 20 sessions minimum. Then you can choose to go to 24ft, then 33ft which is 2ATM. I tolerated 1.5ATM well but 1.75ATM set me back. Possible oxidative stress? I would be very worried if LC patients...