ME Awareness Day / Week / Month, May 2022

Andy

Andy

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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/
 
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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.

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Visit advomonth.org to learn more about the full calendar of May Advocacy Month events. Click here to register by April 22!"
 
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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Join Emerge Australia's Nurse Educator Kate Herbert as we dive into the basics of ME/CFS, including outdated and current understanding of ME/CFS, the importance of post-exertional malaise (PEM) in diagnosis, and management techniques such as pacing that you can use to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:

 
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)
Advocacy Month 2022 focuses on connecting people with ME/CFS, Long Covid, and other related illnesses—brings together scientists, clinicians, and caregivers to educate Congress and the world

LOS ANGELES, May 2, 2022 /PRNewswire/ -- As the prevalence and significant impact of Long Covid continues to increase, the number of people suffering from the debilitating and chronic illness known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) parallels this growth. Solve M.E. and its partners will spend May advocating for people with ME/CFS, Long Covid, and other chronic diseases, to ensure that ME/CFS and other post-infection diseases are widely understood, diagnosable, and treatable.

"The most prevalent Long Covid symptoms — crippling fatigue, post-exertional malaise, and cognitive dysfunction — mirror those of ME/CFS and both are post-viral illnesses," said Oved Amitay, president and CEO, Solve M.E. "We know that learning more about Long Covid deepens our understanding of ME/CFS, and that what we know about ME/CFS can shed light on Long Covid — and ultimately point to treatments and cures for both, as well as other long-haul diseases that share their characteristics."

Advocacy Month events are open to the public and include opportunities for every energy level and ability to join. The kickoff event on May 2 will feature Jessica Kellgren-Fozard, a leading advocate for LGBTQ+ and disability rights who has worked with MTV, BBCThree, BBC Radio 1, and ITV.

A host of other high-profile speakers at the forefront of the scientific and medical community will present, including Dr. Peter Hotez and Dr. Maria Elena Bottazzi — nominees for the 2022 Nobel Peace Prize for their work to develop and distribute a low-cost COVID-19 vaccine to people of the world without patent limitation.

Below are key dates and registration/viewing links (as appropriate):

May 2: Advocacy Month Kickoff

May 4: Remote Congressional Meeting Training

May 10: US House of Representatives Congressional Meetings

May 11: US House of Representatives Congressional Meetings

May 12: World ME Day

May 17: US Senate Congressional Meetings

May 19: Long Covid — Research, Policy and Economic Impact (In-Person and Virtual Event)

May 26: EmPOWER M.E.

Registration is required for some events. Click here for a full calendar of events and registration information.

A recently released whitepaper by the Solve Long Covid Initiative spotlights the staggering economic impact of Long Covid:

  • 22 million U.S. adults are living with Long Covid (LC) – close to 7% of the population.
  • 7 million are experiencing Disabling Long Covid (DLC) – 2.3% of the population.
  • As of January 2022, the cumulative cost of LC is estimated at more than $386 billion. (This estimate includes lost wages, lost savings, and medical expenses incurred by individuals. It does not include costs incurred by businesses or government agencies.)
  • Complete state statistics may be found here.
Before the pandemic, experts estimated up to 1 to 2.5 million cases of ME/CFS. Now, after two years of COVID-19, those same experts estimate between 5 and 9 million cases of ME/CFS. A similar explosion of cases is happening with other post-viral conditions.
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rest of article here
https://www.prnewswire.com/news-rel...chronic-fatigue-syndrome-mecfs-301536979.html
 
"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
A woman has said she is "immensely proud" to be working again after a long struggle with a chronic illness.

Saskia James, 28, from Chippenham, has myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, a long-term debilitating condition.

Ms James said: "I never let it define me, slow me down or dictate what I could or couldn't do, but in hindsight that was probably a mistake."

She wants to help others by telling her story for ME Awareness Week, 9-15 May.

Ms James told BBC Radio Wiltshire: "I started having seizures when I was 14 and then had hundreds more."

She said the seizures happened "through all my exams and lots of special occasions, including birthdays, my graduation, in restaurants and church services".

At one point Ms James's symptoms were so severe she had to stop working and move back in with her parents.

"I struggled with sensory overload, so couldn't bear sound, couldn't bear light and just had to put a blindfold on and go to bed," she added.

She said she feared she might never recover.

"Everyone says get up, get on with it, power on through, so I did. I didn't stop and I think that was my mistake."

However, eventually her "slow" recovery began and she said even her worst days now are "a hundred times better than my best days then".

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The ME Association said as many as 265,000 people in the UK are living with ME.
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For a long time, the existence of CFS/ME was widely dismissed and labelled unkindly as "yuppie flu".

That opinion has largely been reversed in the past 20 years.
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Really?
https://www.bbc.co.uk/news/uk-england-wiltshire-61321395
 
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Elderly woman bedridden for 26 years due to ME hits out at those who call those affected lazy
A woman who came home from work with a sore throat in 1996 and never recovered has spoken of the overwhelming effects a virus had on her body. Her not allowing time to recover from the virus led to her developing ME and she has stressed how the stigma associated with ME of people being lazy, could not be further from the truth.

Former teacher Veronica Jones, 82 from the Forest of Dean fell ill in 1996 with a flu like virus. She has suffered with post virus fatigue when recovering but did not give herself enough time to rest which she has since regretted.

Mrs Jones said: “I got in from work in 1996 with a sore throat. It seemed to be just a flu virus but I had post viral fatigue symptoms and when you are recovering from you must take time to rest and convalesce.
Click to expand...
https://www.gloucestershirelive.co.uk/news/gloucester-news/elderly-woman-bedridden-26-years-7049397
 
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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)
 
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