ME Awareness Day / Week / Month, May 2022

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First World ME Day and theme launched by alliance members

"The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME). Through collective action, we will step closer to our goal of a world without ME.

World ME Day will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day. By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power.

The theme for the first year of World ME Day is #LearnFromME."

https://worldmealliance.org/2022/02/first-world-me-day-and-theme-launched-by-alliance-members/

 

Merged thread

From a Solve ME email.

"The countdown is on for Solve M.E. Advocacy Month! Virtual Congressional Meetings, our hallmark advocacy events, are great opportunities to connect with and educate your legislators, raise the issues most vital to our community, and lay the foundation for a better future for people with ME/CFS, Long Covid, and other chronic diseases.

Advocacy Month 2022 will be our sixth annual advocacy event! We’ve organized over 900 meetings with Congress, and we’re so excited to connect with you again to empower your story and create change. Below, we’re sharing testimonials we received from participants in last year’s advocacy events.



Visit advomonth.org to learn more about the full calendar of May Advocacy Month events. Click here to register by April 22!"

 

Emerge Australia’s May awareness week webinar series:

The Basics of ME/CFS
Join Emerge Australia's Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to manage life with ME/CFS.

Q&A with Dr Richard Schloeffel
Emerge Australia Medical Director Dr Richard Schloeffel OAM will join CEO Anne Wilson to answer all your questions about ME/CFS including ME/CFS symptoms, diagnosis, management, GP education and clinical guidelines.

Building your Post-Exertional Malaise (PEM) Toolkit
Join Emerge Australia's Manager of Patient Support and Information Services Laura Allen and Nurse Educator Kate Herbert in a live and interactive session to support you in building your PEM toolkit! This powerful session will pool the collective wisdom of our amazing ME/CFS community to support you to come away with new tools to manage PEM.

ME/CFS Research Panel
Emerge Australia's Research Manager Michelle Tavoletti will be joined by leading Australian researchers to unpack their latest local developments in ME/CFS research, as well as provide an update on the Australia ME/CFS Biobank and Patient Registry.

https://www.emerge.org.au/mecfs-awareness-week-2022

 

Ask Congress to TREAT & CARE for Post-Infection Diseases During Advocacy Month

"Advocacy Month is an opportunity to share the policy solutions vital to address the growing number of people suffering from ME/CFS and Long Covid.

ME/CFS devastated the lives of an estimated 2.5 million Americans before COVID-19. Because of the pandemic, those numbers are now estimated to be between 5-9 million. Today, millions of Long Covid patients are being diagnosed with ME/CFS.

This year, we have TWO main asks of the House and Senate chambers of Congress:"

https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

Solve M.E. sent an email with a short video (less than 5 minutes) about Advocacy Month.

For those new to this term Advocacy Month is a yearly period of advocacy work where volunteers contact government officials to ask them to support pending legislation.

This video summarizes the talking points for congressional meetings:

https://www.youtube.com/watch?v=4HZO1JrwXtE

 

Email from Solve.

"Your Guide to Advocacy Month Events!

Advocacy Month is a nationwide advocacy effort to connect people with ME/CFS, Long Covid, and other chronic illnesses; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make ME/CFS, Long Covid, and other post-infection diseases widely understood, diagnosable, and treatable.

The deadline to register for congressional meetings has been EXTENDED UNTIL TOMORROW, April 24! Sign up here to meet with your representatives and senators on May 10, 11, and 17!

Advocacy Month includes a host of other activities for every energy level and ability to join:

May 2: Advocacy Month Kickoff:

We are kicking off Advocacy Month with a keynote address by disability advocate Jessica Kellgren-Fozard and a discussion about the importance of sharing our stories and raising our voices to create change!"

Read more at https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

‘Blue Sunday’ 2022

"Once again, I’m hosting my Tea Party For M.E. for people with M.E. and their family and friends. I strongly believe that we need and deserve as dedicated day of fundraising, but also a day where we can come together to mark and celebrate our resilience and our strength in the face of this cruel and life-altering disease.

On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes."

https://the-slow-lane.com/blue-sunday-2022/

 

Solve ME: Join our May 2 Advocacy Month Kickoff with Keynote Speaker Jessica Kellgren-Fozard

"Advocacy Month is a nationwide advocacy effort to connect people with ME/CFS, Long Covid, and other chronic illnesses; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make ME/CFS, Long Covid, and other post-infection diseases widely understood, diagnosable, and treatable.

This Monday, May 2, at 10 am PT/ 1 pm ET, we’re kicking off Advocacy Month with a presentation by our keynote speaker, disability and LGBTQ advocate
Jessica Kellgren-Fozard."

https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

THE WIDESPREAD IMPACT OF LONG COVID CONTINUES TO GROW, SHINING AN EVEN BRIGHTER LIGHT ON MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME (ME/CFS)

rest of article here
https://www.prnewswire.com/news-rel...chronic-fatigue-syndrome-mecfs-301536979.html

 

Create your own custom poster

https://worldmealliance.org/worldmeday/custom-poster/

 

"This week, we kicked off Advocacy Month with a discussion about the importance of sharing our stories and raising our voices to create change!

Solve M.E.’s Vice President of Advocacy and Engagement, Emily Taylor, detailed her mother’s experience with ME/CFS and her role as an advocate and caregiver. We also heard insights from our panelists Cynthia Adinig, Sarah Ramey, and Sarah Tompkins, who generously recounted their own disease experiences.

The Solve M.E. advocacy team also gave a sneak peek into exciting events throughout May!"

https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

Should this thread also include press coverage and other media attention for the Awareness Month, or should we make a separate thread for that? Just saw a great one from New Zealand I'd like to share

 

Stuff science columnist Dr Siouxsie Wiles writes:

Stuff Here comes the long-Covid tsunami

Quote:

May 12 is the anniversary of the birth of Florence Nightingale, the English statistician and social reformer credited with founding modern nursing.

While you might remember Nightingale as the “Lady with the Lamp”, you may not know that when she founded her nurse training school in 1860, she was virtually bedridden with an illness resembling ME/CFS. This is why May 12 is now International Awareness Day for ME/CFS.

ME/CFS is a serious, life-long illness affecting multiple body systems and which often, but not always, happens after an infection. The ME stands for Myalgic Encephalomyelitis which was how the Americans first referred to the disease. The British called it Chronic Fatigue Syndrome, hence the CFS.

 

Woman with ME 'immensely proud' to be working again

Really?
https://www.bbc.co.uk/news/uk-england-wiltshire-61321395

 

Merged thread

Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy

https://www.gloucestershirelive.co.uk/news/gloucester-news/elderly-woman-bedridden-26-years-7049397

 

This is just a copy of an article in local news, last week. I knew I had read it before.

https://www.gazetteandherald.co.uk/news/20110501.saskia-james-immensely-proud-working/

I'm surprised BBC does that.

 

The trivialising list of symptoms in this (otherwise very good) article is taken straight from the NHS.uk pages on ME/CFS (article 'Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy').

The NHS pages (mis)info must have been added by the journalist, and badly detracts from the excellent statements by the pwme in the article which emphasise the seriousness of ME. This is just one example of how the NHS is still misrepresenting ME.

• feeling extremely tired all the time – you may find it very hard to do daily activities
• still feeling tired after resting or sleeping
• taking a long time to recover after physical activity
• problems sleeping, such as waking up often during the night
• problems with thinking, memory and concentration

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/



I see no progress while the NHS is still calling ME "tiredness". What year is this?? 1980??




The NHS page goes on to say "Treatment for ME/CFS aims to relieve the symptoms"



"Treatment for ME/CFS aims to relieve the symptoms. Your treatment will depend on how the condition is affecting you

While there is currently no cure for ME/CFS, there are treatments that may help you manage the condition.

Treatments include:

• cognitive behavioural therapy (CBT)
• energy management – where you're given advice about how to make best use of the energy you have without making your symptoms worse
• medicine to control symptoms such as pain and sleeping problems
  
  
  THEN the NHS page claims that:
  
  "Some people with ME/CFS will improve over time, especially with treatment"

Some of the material on the 'Symptoms' page is much better, more useful, but still refers to tiredness, no mention of PEM and is terminally confused about CBT, calling CBT a "Specialist treatment", and states that all people with mild or moderate ME/CFS should be offered CBT. That is NOT what NICE 2021 says.


NHS.uk:
"The main symptom of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), is feeling extremely tired and generally unwell"


"Specialist treatments
There are a number of specialist treatments for ME/CFS.


Cognitive behavioural therapy (CBT)
If you have mild or moderate ME/CFS, you should be offered cognitive behavioural therapy (CBT).

CBT is a talking treatment that can help you manage ME/CFS by changing the way you think and behave"

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/





These NHS pages are trivialising, misleading and incoherent. There is no reference to PEM, the pages refer to 'Energy management' but no mention of Pacing.





@Charles Shepherd - is it possible for Forward ME to do something about these NHS pages, to get all references to "tiredness" removed, to include and explain PEM, to get rid of the incoherence, which says there is no cure, but that 'some people improve over time with treatments' (ie CBT) and that all mild and moderate sufferers should be offered CBT (as specialist treatment, according to the NHS.uk pages)

 

don't think Charles Shepherd is a member here and quite a while ago the MEA said that addressing the NHS content was on their 'to do' list.
I would have thought that they should be aware.
see thread
https://www.s4me.info/threads/nhs-e...9th-october-2021-nice-publication-date.23065/

 

I can raise this within FME. We are working on trying to improve NHS ME/CFS services' websites, and obviously this main NHS page is important.