It can be hard to navigate the NICE guidelines when experiencing brain fog or too weak to read, so I have screen shots of relevant passages

These are for #pwVSME regarding hypersensitivities

#SaveCarlasLife
#ExposeMENow
#BringMillieHome
#DontLetMEDie
#pwME

The ME Association's Research Index

A fantastic resource on the website that is searchable by the subject matter or by authors of research.

Search the index here:

meassociation.org.uk/research-index/

#pwME #MECFS #MyalgicE #MyalgicE ncephalomyelitis #LongCovid #PostCovid #Research

Booklet: Disability Rating Scale - New booklet available as a free download

We have produced a Disability Rating Scale that expands on the illness severity definitions recommended in the NICE Guideline on ME/CFS.

meassociation.org.uk/f7fq

#pwME #MECFS #MyalgicE …

@TheChronicCollaboration Please 𝑫𝒓 𝑵𝒊𝒈𝒉𝒂𝒕 𝑨𝒓𝒊𝒇 as an ally of #pwME please help. This is beyond distressing for Carla and her family and disregards the NICE guidelines on hospital care for patients with Very Severe ME

(Screen shot is relevant excerpt of guidelines)

#SaveCarlasLife
#ExposeMENow

Petition update · An update about Millie from her family · Change.org · Change.org #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie #DontLetMEDie change.org/p/save-millie-…

Carol Monaghan MP 🏴󠁧󠁢󠁳󠁣󠁴󠁿 🇺🇦, so grateful for your ongoing support. Can you and your colleagues on the APPG for ME please intervene in Carla's and Millie's cases? #pwME can't continue to receive cruel out-of-date treatment. NICE guidelines are being ignored. #SaveCarlasLife #BringMillieHome

Update about Millie:

Petition
change.org/p/save-millie-…

Fundraiser
justgiving.com/crowdfunding/b…

#BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie

The nucleus of the medulla oblongata in Long Covid and ME/CFS should be studied by researchers immediately. Vasomotor denervation is common in these diseases. Functional MRI and QEEG/SPECT would be ideal. #LongCovid #pwME

We need competent research plus an actual TREATMENT and not more dumb doctors that tell the patients to drink more fluids and offer them vitamins. Our advocates like this suck. Wasting their time. #LongCovid #pwME #Pots

OPEN LETTER: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

If you'd like to read and sign this open letter, you can do so here:

organise.network/actions/petiti…

#pwME #MECFS #MyalgicE #MyalgicE ncephalomyelitis #SevereME #NICEguideline

Do any #pwME or #pwLC have any full spectrum amino acid supplement recommendations? Also do people find it easier to tolerate introducing one amino acid at a time, or is it relatively safe to start a combination of them at once?

Join the ‘Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)'

The open letter is available to read and sign here: organise.network/actions/petiti…

#pwME #MyalgicE #MECFS #MyalgicE ncephalomyelitis #NICEGuideline #SevereME #OpenLetter

A reminder that today is another day for #pwME to make their voices heard on Bernie Sanders' Long Covid Moonshot Proposal 🚀📧

Especially those in the US!

Below is are the 3 steps I proposed in my email to ensure #MECFS & wider #IACCs are included explicitly

My full email is…

As always Valerie is spot on. Why wasn’t this done decades ago by the largest charities instead of the luke warm “we’ll discuss it at the APPG” whenever that might be, which ALL the charities should be attending. #BringMillieHome #myalgicE #pwME

When you're diagnosed by a leading UK doctor in your disease as having #SevereME
- yet the BBC states: 'Her family said they believed she has ME'

BBC pls correct - that is inaccurate reporting. She has a diagnosis of ME!
- still, thanks for covering this
#MECFS #pwME #pwLC

Rory’s made a webdoc to make it easier for us to support emailing [email protected] asking for ME to be included in the proposal. Please do this including your own story or add your own thoughts.
Thanks so much
#MyalgicEncephalomyelitis #PWME

Thank you Rory

Seema Malhotra is the MP in this area. Any #pwME who are constituents that can write to her? I can help with a letter if needed

#SaveCarlasLife
#ExposeMENow

Attention to all #pwME that like birdwatching!

#SaveCarlasLife
#ExposeMENow

More details about the horrendous treatment of #pwME Carla.
Where is the APPG? Where is her MP? Where is the support of our charitable organisations for her?? How many more???