MEadvocacy.org

12/02/2024

We are saddened about the passing of Dr. Byron Hyde who was a champion for people with

To learn about Dr. Hyde, see this article from View from the Trenches of ME:

A champion for people with ME leaves behind a legacy of information.

05/11/2024

May 12, 2024 International Awareness Day - Still Battling US Health Agencies

We mark this date remembering those who have advocated for myalgic encephalomyelitis and other marginalized diseases.

Read our latest blog post at https://www.meadvocacy.org/may_12_2024_international_awareness_day_still_battling_us_health_agencies.

We are wishing all people with ME a year of better health, proper recognition of the disease and most importantly good research that will lead to effective treatments.

03/01/2024

View from the Trenches of Myalgic Encephalomyelitis has published a new article covering the recently published NIH paper.

Covers input from various members of the community about the significant issues with the overconfident conclusions in the publication.

https://open.substack.com/pub/colleensteckelmeiccinfo/p/nih-intramural-mecfs-study-finally

Not a study about myalgic encephalomyelitis

02/14/2024

RESEARCH - opportunity to give suggestions

Deadline of March 8, 2024 to give feedback to U.S. NIH about the Research Roadmap.

See article from View from the Trenches of Myalgic Encephalomyelitis about importance of patient selection for studying

-- Stratify patients including using the International Consensus Criteria (ICC)

--Pursue biomarkers

--Include Severe ME patients (as safely as possible)

Deadline March 8, 2024

01/15/2024

New article from View from the Trenches of Myalgic Encephalomyelitis gives info about the "How to Get On" website.

The website gives info about dealing with social security disability in the US and many other tips to obtaining services found throughout the US.

https://open.substack.com/pub/colleensteckelmeiccinfo/p/how-to-have-a-great-disabled-life

Lily’s “How to Get On” Website

12/20/2023

U.S. - CDC reports on prevalence of Myalgic Encephalomyelitis & CFS

New article in View from the Trenches of Myalgic Encephalomyelitis covers the recent CDC report about how many people were diagnosed with CFS & ME.

Discusses the following:

- Thoughts on the survey findings

- 1.3% is based on faulty data for a number of reasons

- Prevalence numbers are similar to what states found in 2014 and 2016 using the same questions

- Articles written based on this publication mischaracterize the reality of living with ME

- What journalists could do to improve mainstream articles

- The prevalence of ME (the distinct disease) is closer to 0.4%

Flawed info harms people with ME

07/15/2023

Since March of 2014, various MEadvocacy volunteers have worked together to bring accurate information about ME via blogs on our website and postings on various platforms.

MEadvocacy's mission is to advocate for recognition, definition, and research for Myalgic Encephalomyelitis.

Announcing an update to our Resources page. Part of that update includes a link to a Table of Contents from the ME-ICC Info group on Facebook. This resource includes links to the International Consensus Primer in multiple languages as well as information for patients, clinicians, carers and researchers based on the International Consensus Criteria (ME-ICC) .

Hopefully these updates will be useful to advocate for better care as well as bring awareness to the reality of ME.

https://www.meadvocacy.org/resources

06/24/2023

Advocating for ME while having ME is very difficult. Read here about how advocating for ME has brought an award to long time advocate Joan McParland of Hope 4 ME & Fibro Northern Ireland.

Hope 4 ME & Fibromyalgia Northern Ireland shows how running a steady race pays off

05/12/2023

May 2023 - Status report

Another May 12, International Day of Awareness, is here. For many of us this marks decades of living with myalgic encephalomyelitis (ME). ME advocates have been raising awareness about the disease as well as the uphill fight against HHS who have attempted to disappear ME for decades.

Read our blog about advocacy, research and how to stay informed.

https://www.meadvocacy.org/may_12_ongoing_fight_to_end_hhs_crime_stop_evaporation_of_me