December 2021 Newsletter
Greetings! 

Welcome to our ME International newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 
 
Sincerely,

Ona Abizu, Euskadi, Spain, Contributor
Jennifer Caldwell, N. Carolina, USA, Proofreader
Kathy Collett, Western Australia, Contributor
Jim Lutey, Colorado, USA, Designer, Editor
David Steckel, Illinois, USA, Proofreader
Sue Mueller, Ohio, USA, Contributor
TIP FOR THE MONTH
Pain

Are you in pain?
Click HERE for a list of various types of pain associated with ME and some helpful remedies.

IN THIS ISSUE
CONTENTS

  • ME INTERNATIONAL NEWS
  • Clarity For All
  • Website Updates
  • PATIENT CARE
  • Do I Have ME?
  • Retracing the Steps of Giants
  • New Mechanism to Report Non-pharmaceutical 'Treatment' Harms
  • ADVOCACY
  • Ireland - Patient Input Needed
  • SCIENCE
  • Underlying Cause of the Spectrum of ME/CFS
  • IN MEMORIUM
  • ME/CFS Memorial Page

ME INTERNATIONAL NEWS
Clarity For All

ME International volunteers have created and submitted comments on the diagnosis codes presented at the ICD Coordination and Maintenance Committee meeting.

Click HERE for the blog on our website. You can click on our full submission as well.

Website Updates

We have added Coping With Symptoms While Waiting for a Cure info sheet to our Patient Resources page. This includes information about managing many symptoms, compiled from the North Carolina/Ohio ME & FM Support Group on Facebook. Tips apply to symptoms found in many chronic conditions. 

We also added Communicating with your Doctor to the Patient Resources page to help your doctor understand ME.

We are getting closer to having a Spanish translation of the ME IC Primer. The original English and 5 translations of the Primer can be found on our IC Primer and ME Info Sheets page.

Our Published ME-ICC Studies page continues to be updated, as well as our Understanding Criteria page,

PATIENT CARE
Do I Have ME?

The Swiss Society for ME & CFS developed a questionnaire that is on our Do I Have ME? page to enable you to determine whether the diagnosis of ME according to the ICC may be applicable to you. It is offered in both English and German.

Please take the questionnaire by clicking HERE and let us know what you think.

RETRACING THE STEPS OF GIANTS
By Kathy Collett, Western Australia

Since I have been on Twitter which is nearly three years now, I have noticed patients who've developed the illness in recent times add on other illnesses and link them to ME. Some long-term patients have referred to this as "muddying the waters." The patients who do this are not aware of previous research by doctors who started investigating in the 1980s and when their research is recycled by some other researcher the patients think it is new. For example, Dr. Les Simpson identified deformed red blood cells in the 1980s and a paper was published by another researcher last year without acknowledging Dr. Simpson despite the researcher knowing about it. Likewise, decreased blood flow to the brain was proven in the late 1980s by Drs Jay A. Goldstein and Mena and once again no credits have been included despite it being repeated many times over the years. Dr. Goldstein called it reinventing the wheel.

To avoid "muddying the waters" it would be a good idea to read The Disease Of A Thousand Names by Dr. David Bell because he includes a check list of 50 symptoms. Of course not all patients have the same symptoms but it is a very good guide. I got the book from my local library.

Also, Dr. Jay A. Goldstein wrote several books and they are very complicated but so is the illness. They are listed in an article I wrote. If you want to read my article it's: The Lost Years Kathy Collett. Although it is very complicated, it is easier to check the indexes for your symptoms to find the relevant page number to read what he has written.

New Mechanism to Report Non-pharmaceutical 'Treatment' Harms



Non-pharmaceutical 'treatments' are prescribed for many diseases by the NHS. However, patients do not have anywhere to report harms to. There is a widespread false assumption that non-pharmaceutical 'treatments' cannot harm patients.

You can read the article HERE and sign the petition if you wish. This petition specifically relates to the issues encountered by the ME/CFS patient community. However, a new mechanism will benefit all patients, with any illness, who are harmed by non-pharmaceutical 'treatments'.

The article references the published NICE Guideline and includes a letter (somewhat outdated) by Sally Callow who stated "I hope you can clearly see the issue I hope to tackle with this petition. ME/CFS patients have needed this reporting mechanism for many years, and now this need is widening to encompass the Long COVID community."

ADVOCACY

Ireland - Patient Input Needed

National ME Survey


NOTE: This survey is for people in Ireland only, however we thought our readers would be interested in what MEAI is doing with the survey in Ireland.

When we first started our advocacy work, we had a number of concerns. We were concerned about the limited knowledge among the general public and that information and education about ME wasn’t reaching those outside the ME community. We were and still are concerned by the lack of understanding among clinicians, government agencies, community services, and the general community regarding diagnosis and management of ME.

Now is the right time to address these issues.

You may have already heard about our survey campaign. Our aim is to build the legitimacy of ME through our ongoing survey campaign that will highlight and explore the needs of all people living with ME and their caregivers.

We are grateful to the members of our community many of whom live with ME, and/or are family members of patients, for their feedback while the survey campaign continues.

Can you help us?

We are working very hard behind the scenes on behalf of all people living with ME in Ireland (Rep) to deliver an impactful evidence base/feedback for Irish health agency, the HSE and the Dept. of Health.

But we can’t do it without your support. You can help us!

If you are interested in completing our National ME Survey please send a request via email address info@meadvocatesireland.com
or
contact MEAI via the private message button (see the Facebook page HERE).
or
make contact in any way that suits you.

Please help spread our messages via social media far and wide. Like, comment, and share content to your page and with your contacts. This support will make a huge difference to the reach and success of the survey campaign.

Thank you
MEAI Survey Coordinators
SCIENCE


Underlying Cause of the Spectrum of ME/CFS



Dr. Maureen Hanson, Department of Molecular Biology & Genetics at Cornell University, made this interesting presentation at the Massachusetts ME 2021 Annual Meeting in September.

Dr. Hanson uses the term ME/CFS, but her patient selection is more likely to result in research that applies to ME as defined by the ICC.

She covers a few things that could end up being biomarkers.
She also discusses benefits of what we are learning from Long COVID about post infectious diseases but notes that while there are some common symptoms, we don't know yet if there are the same underlying mechanisms. She brings up that while Gulf War Illness has similar symptoms, we now know it is not identical to ME/CFS and that Long COVID could be the same situation. She also brings up enteroviruses as a possible cause of ME.

View Dr. Hanson's presentation HERE.

IN MEMORIAM
ME/CFS Memorial Page

"This page acknowledges all those who have passed from ME/CFS or secondary conditions. They acknowledge their suffering and promise that they have not died in vain. With love, we remember them." Click HERE for the memorial page.

The purpose of ME (Myalgic Encephalomyelitis) International is to educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.