Tag: Advocacy

Online Health Communities in Controversy over ME/CFS and Long Covid

Abstract:

The condition known variously as myalgic encephalomyelitis, chronic fatigue syndrome, or ME/CFS has been steeped in controversy for 40 years or more. Long Covid, first noticed and named in 2020, has become entangled with the ME/CFS controversy because of striking similarities in the experiences of patients suffering from the two illnesses. Online health communities (OHCs) have played central roles in both controversies, but these are not the kinds of roles that have been so well-documented in prior literature.

While prior research has established many ways in which participation in an OHC may benefit or otherwise affect community members themselves, this essay focuses on how OHCs contribute to positional shifts in health controversies that involve other communities as well. Using a framework for understanding health controversies as argumentative polylogues, I show that OHCs arguing with other players have made contributions that are both effective in gaining ground for the OHCs’ own goals and in elevating the overall quality of the debate. Further, in some cases these contributions have been so innovative as to suggest surprising future trajectories for OHCs.

Source: Jackson, S. (2023). Online Health Communities in Controversy over ME/CFS and Long Covid. European Journal of Health Communication, 4(2), 49–72. https://doi.org/10.47368/ejhc.2023.203 https://ejhc.org/article/view/3559/2989 (Full text)

Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review

Highlights:

• Co-produced peer support can help people living with Long COVID.
• Increasing the use of effective peer support may reduce health inequalities.
• Inclusive peer support can benefit ‘hardly reached’ Long Covid cohorts.
• Linking biomedical, relational and socio-political styles are most effective.

Abstract:

Since the first wave of COVID-19 in March 2020 the number of people living with post-COVID syndrome has risen rapidly at global pace, however, questions still remain as to whether there is a hidden cohort of sufferers not accessing mainstream clinics. This group are likely to be constituted by already marginalised people at the sharp end of existing health inequalities and not accessing formal clinics. The challenge of supporting such patients includes the question of how best to organise and facilitate different forms of support.

As such, we aim to examine whether peer support is a potential option for hidden or hardly reached populations of long COVID sufferers with a specific focus on the UK, though not exclusively. Through a systematic hermeneutic literature review of peer support in other conditions (57 papers), we evaluate the global potential of peer support for the ongoing needs of people living with long COVID.

Through our analysis, we highlight three key peer support perspectives in healthcare reflecting particular theoretical perspectives, goals, and understandings of what is ‘good health’, we call these: biomedical (disease control/management), relational (intersubjective mutual support) and socio-political (advocacy, campaigning & social context). Additionally, we identify three broad models for delivering peer support: service-led, community-based and social media. Attention to power relations, social and cultural capital, and a co-design approach are key when developing peer support services for disadvantaged and underserved groups.

Models from other long-term conditions suggest that peer support for long COVID can and should go beyond biomedical goals and harness the power of relational support and collective advocacy. This may be particularly important when seeking to reduce health inequalities and improve access for a potentially hidden cohort of sufferers.

Source: Mullard JCR, Kawalek J, Parkin A, Rayner C, Mir G, Sivan M, Greenhalgh T. Towards evidence-based and inclusive models of peer support for long covid: A hermeneutic systematic review. Soc Sci Med. 2023 Jan 14:115669. doi: 10.1016/j.socscimed.2023.115669. Epub ahead of print. PMCID: PMC9840228. https://www.sciencedirect.com/science/article/pii/S0277953623000242 (Full text)

Transcript: NIH ME/CFS Advocacy Call – March 28, 2022

Transcript:

Ms. Barbara McMakin: Good afternoon everyone and thank you for standing by. My name is Barbara McMakin and I’m from the NINDS Office of Neurosciece Communications and Engagement. On behalf of the NIH, I would like to welcome you to this afternoon’s call and to thank you for your interest in participating in this discussion with us today.

Today’s call is being recorded. If you have any objections please disconnect at this time. Dr. Vicky Whittemore, Program Director at NINDS, will introduce the speakers, each of whom will make some remarks, after which we will answer your questions. If you have a question for our speakers, we invite you to submit it through the Q and A box at the bottom of the Zoom screen. We will try to make our remarks brief so that we can answer as many questions as possible in the time available to us this afternoon.

I also wanted to mention that we are exploring different formats for these telebriefings going forward. For our next telebriefing we plan to include live oral questions during the question and answer session. That telebriefing has not yet been scheduled, but once we have those details we will send out a message to the listserv and post the call information on the ME/CFS website. Now, I would like to hand the call over to Dr. Whittemore.

Read the rest of this transcript HERE.

Sign for MECFS!

In Germany, there is virtually no medical care for ME/CFS patients and to date there is no government funding for biomedical scientific research into this devastating disease. With 50,000 signatories before the end of the deadline, we will even be granted a public hearing in the German Bundestag. This would be our best chance to finally draw attention to the issue of ME/CFS in German federal politics. Sign the petition! It will only take a few minutes and can be done online. Anyone can sign, worldwide! Read more here>>

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society Statement on the Graham-Cassidy Amendment

PRESS RELEASE AND PUBLIC COMMENT

September 23, 2017 – Between one and two million Americans suffer from Myalgic Encephalomyelitis (ME), a chronic disease that profoundly disrupts the immune and nervous systems of those who contract it. Twenty-five per cent of those affected are severely ill, and unable to meet their needs. These patients rely on Medicaid services not only for access to medical care but for home assistance as well. The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES) is deeply concerned about the effect the proposed Graham-Cassidy Amendment will have on patients with ME.

The proposed changes to Medicaid outlined in the Graham-Cassidy Amendment could have a drastic impact on patients. Community services would be cut, hospitalizations could be eliminated, pre-existing conditions – including ME – would be excluded from coverage. Laboratory services would also be curtailed, which would be devastating for ME patients, who frequently experience secondary infections as a result of immune dysfunction. Premiums would rise, resulting in a loss of insurance for a significant portion of those who have lost income as a result of ME.

We strongly urge Congress to reject the proposed Graham-Cassidy Amendment. Those living with this debilitating disease must have access to affordable, quality care, which is something the Graham-Cassidy Amendment cannot provide.

*The American ME and CFS Society, a national 501(c)(3) nonprofit, is dedicated to serving the needs of patients and caregivers through support, advocacy, and education.