USA: Massachusetts ME/CFS & FM Association news

500 people registered for the event. Vicky Whittemore helped the group organise it - we are lucky to have her as an ally in the NIH. She mentioned a good friend in the Mass ME/CFS & FM - I think it's likely that that friendship has informed Vicky's attitude towards ME/CFS.

The webinar was well done, well managed with a chat and questions able to be submitted live, and with 10 minute breaks between speakers. However, for such a long event, there wasn't much time for technical content, with the 15 minute presentations being a bit like trying to drink from a water hydrant.

Mass ME/CFS
Claims to the oldest patient organisation in the US, established in 1985. It has been staffed entirely by volunteers (35, providing the equivalent of 2.5 full time people, although they are just now getting a part-time admin assistant. Their support groups are run entirely online, and they have moved to more structured events run by professionals. They have tens of thousands of visitors to their website each year, and they run a help line and provide individual support. They have 300 members.

They would like to get grants but don't really know how to. They have an Artshare programme that has been very popular that they are expanding - I have no more information on that.

I'm going to start a new thread on the webinar content, so as to not risk this thread going off-topic.
Here:
Webinar: Massachusetts ME/CFS & FM research update - 23 October 2021
 
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"On Tuesday, December 14, from 5-6:30pm we are launching a new monthly zoom discussion group entitled: Looking at How ME/CFS Research Might Apply to our Care."

As a follow-up to our recent DIY Club, Sharon Simas will lead a new discussion group on how we can look at recent ME/CFS research and work with our healthcare providers to investigate this research and apply it to our care.

In the first session we will discuss a 2021 research paper initiated by the mother of an ME/CFS patient, Marian Lemke, who partnered with scientific researchers based on her initial idea: https://www.pnas.org/content/118/34/e2024358118

To help participants get comfortable with reading a scientific article we will use this paper to walk you thru the process and explore a laymen's description of the same paper by looking at Cort Johnson's explanation on his Health Rising blog: https://www.healthrising.org/blog/2021/08/21/free-radicals-chronic-fatigue-syndrome-long-covid-pasc/

We will consider how the theories in the paper might apply to us, and possible options we might explore with our own healthcare providers.

In order to have a fruitful discussion, please take the time to explore the web links on your own as best you can, and bring your questions to the discussion.

In case you are interested in learning about how the mom of an ME/CFS patient became involved with ME/CFS research, her story is here: https://www.mdlemle.com/about
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Sounds like an interesting and potentially useful approach to discuss a paper alongside the Health Rising item on it. I'm not completely sure about using a paper that is just theories for this though - there will be a lot of assumptions from references to unpack before getting to the 'possible options we might explore with our own healthcare providers'. Hopefully the necessary level of skepticism will be applied.

December 14th, 2021 5:00 PM
https://www.massmecfs.org/index.php?option=com_civicrm&task=civicrm/event/info&id=82&reset=1
 
Congressmen Jim McGovern (D-Massachusetts) and Jamie Raskin (D-Maryland) visited with researchers studying ME/CFS (myaglic encephalomyelitis/chronic fatigue syndrome) and Long Covid (LC) at the University of Massachusetts Chan Medical School in Worcester, Massachusetts on June 1, 2022.

This exciting visit was organized by the Selin Lab at UMass and ME advocate Rivka Solomon, in conjunction with the Massachusetts ME/CFS & FM Association. Fourteen people attended this private meeting, both virtually and in-person.
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https://www.massmecfs.org/news-even...ovid-researchers-at-umass-chan-medical-school
 
Youtube

A Whole-Person Health Approach to ME/CFS: Lessons for Post-COVID Conditions | Full Event

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multifactorial disease that severely affects a person’s quality of life. Dr. Maria Vera Nunez, MD, MSBI, will describe current evidence of multiple body systems affected in this condition and a holistic whole-person approach to evaluating and treating patients with ME/CFS and Long COVID. Whole-person health is the term the NIH uses for integrative medicine approaches to patient care.

One of Dr. Vera's patients, Kailey, describes how this approach has allowed her to better manage her chronic illness. Afterward, Dr. Kenneth Friedman, PhD, moderates a question an answer session. Dr. Vera uses a whole-person health approach to evaluate patients with chronic, multi-system conditions, including ME/CFS and Long COVID.

She uses advanced functional medicine testing to personalize treatments. She strives to create a partnership with her patients, considering their preferences and empowering them to acquire skills to support their healing process. Dr. Maria Vera Nunez is a Board-certified Internal Medicine and Integrative Medicine physician, a Certified Functional Medicine Practitioner, and has a Master of Science degree in Medical Informatics.

She was an Assistant Professor at Nova Southeastern University’s Institute for Neuro-Immune Medicine, a national referral center for ME/CFS cases, for 7 years. Currently, she is an attending physician at the Whole Psychiatry and Brain Recovery Center in Maryland and a Research Assistant Professor at the Medical University of South Carolina.

Dr. Kenneth Friedman has contributed to three nationally-recognized primers on ME/CFS, written numerous articles about the disease in peer-reviewed journals, participated in the U.S. Department of Health’s Chronic Fatigue Syndrome Advisory Committee, and edited three medical journal issues focused on ME/CFS.

This program is part of “Sunday Conversations with MassME,” a monthly speaker series with discussion on a wide variety of topics.

For more information about the Massachusetts ME/CFS & FM Association, visit: http://www.massmecfs.org For more resources from this event, including slides and links, go to: https://www.massmecfs.org/news-events...

00:00 Introduction
3:01 Whole Person Health with Dr. Vera
41:43 Patient Perspective
45:33 Q&A
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"Functional medicine is a form of alternative medicine that encompasses a number of unproven and disproven methods and treatments.

...It has been described as pseudoscience,[5] quackery,[6] and at its essence a rebranding of complementary and alternative medicine.[6]

In the United States, functional medicine practices have been ruled ineligible for course credits by the American Academy of Family Physicians because of concerns they may be harmful."

https://en.wikipedia.org/wiki/Functional_medicine
 
Making a general statement here. There's a big contingent of American woo in advocacy organizations and even some university research departments.

The dissatisfaction with the way the medical establishment 'operated' 20 years ago or so, or the limits of what medicine knows and can do, led to dissatisfaction and search for "better medicine" and this resulted in complementary/alternative and total woo acceptance that has invaded or been tolerated in clinical situations (the customer is always right).

When there is no evidence of efficacy, woo-sham needs to be called out for what is: worthless. But that would offend.
 
Ironically, I keep seeing that the only doctors who even bother to help with Long Covid are functional doctors.

So it may be useless and mostly quackery, but what does it say about medicine that so many people still find it more useful than medicine, because of all the gaslighting and lying?

It's actually hard to be this bad, to be worse than useless. No wonder the alternative medicine industry is that big.
 
Jaybee00 said:
Shhh. Don’t tell Tony but the reason that there are emerging parallels is that LC with MECFS symptoms is the same disease as MECFS.

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At this point if you are calling Long Covid "emerging" you just ignored 2 years and 8 months of really vast numbers of disabled people appearing, you can hardly consider yourself any form of expert if you think this is emerging at this point, that horse bolted over 2 years ago. Just as the pandemic is firmly ongoing so is Long Covid. All the research still points to the biggest cohort of Long haulers meeting the Canadian consensus for ME/CFS and many more are likely developing it. You have to have been hiding under a rock never reading any news to not have known about Long Covid for years at this stage and to have ignored all the early research from 2020 that showed the same known biomarkers.
 
Jaybee00 said:
Shhh. Don’t tell Tony but the reason that there are emerging parallels is that LC with MECFS symptoms is the same disease as MECFS.
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We can't be certain of that yet, I think.

BrightCandle said:
At this point if you are calling Long Covid "emerging" you just ignored 2 years and 8 months
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I suspect he's thinking on a longer timescale. In disease terms, it's newly emerged compared with almost all other diseases.
 
This framing of a "parallel pandemic" has been growing a bit lately and it's so damn weird. Like labeling the flooding after a storm as a separate event from the storm itself. This only serves to create a false separation between the consequences of maximizing the spread of COVID.
 
rvallee said:
This framing of a "parallel pandemic" has been growing a bit lately and it's so damn weird. Like labeling the flooding after a storm as a separate event from the storm itself. This only serves to create a false separation between the consequences of maximizing the spread of COVID.
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It's so depressing because they have been thinking about LC and disability so little that they need a whole separate concept and talk of a "parallel pandemic" to discuss what has been happening all along and everyone refuses to acknowledge - any outcome other than death or everything being (seemingly) fine.

As long as they get there in the end I'd feel better, but I'm not sure there is a shift in understanding just yet.
 
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