Patient advocate by choice: Solve M.E.’s Oved Amitay

This article by Charlotte Kilpatrick  originally appeared on VaccineNation.org.

Although the World Vaccine Congress West Coast is a few months away, we and our speakers are already gearing up and preparing a fantastic agenda for the community. Part of this preparation will involve more exclusive interviews, and in this post we are thrilled to share a pre-event conversation with Solve M.E.’s President and CEO Oved Amitay. This was conducted via video call and a full transcript can be found at the bottom of the page. We are grateful to Oved and his team for their time and insights into their work, and hope you enjoy the interview.

Introducing Oved

Oved introduces himself as a “pharmacologist by training” and a “patient advocate by choice”. As President and CEO of Solve M.E., he leads a team that is focused on people who are living with post-infection conditions. Since 1987, the organisation has been serving this community and their “significant unmet needs”.

Patient support and advocacy

Since 1987, Solve M.E have been focused on the needs of the ME/CFS community. Oved kindly gave us a bit of background into the organisation, suggesting that a number of global outbreaks left a number of people “in a state where they did not recover” to full health. At the time Solve M.E. was established, patients were unable to use internet resources to connect with each other or learn more, so the need for a “patient support group” was clear. The condition Solve M.E. was founded to support has been described as chronic fatigue syndrome, or myalgic encephalomyelitis, and other names, but can be traced “throughout the literature”.

“Over the years our organisation took on the mission of not only supporting patients, but also advocating for more research, more funding for research, and that has been a major cause for us, really representing this community.”

What happened during COVID-19?

As Oved notes, COVID-19 affected us all in different ways and was a “tragic event”. However, for the community that Oved serves, it had a “profound impact”. In 2020, the team recognised that Long COVID was a related condition and (like many of their peer organisations) pulled in into the fold to begin addressing post-infection diseases more broadly.

“COVID-19 I think really helped, tremendously, getting into the mainstream consciousness that these are profound diseases that have very significant impact on individuals and, that the origin is an infection...and so, if there is a silver lining in this tragic pandemic it’s that we will finally get to the bottom of it.” 

Prevalent diseases we’ve never heard of

A quick look at Solve M.E.’s website highlights the message that they are tackling the “most prevalent diseases you’ve never heard of”. So, what does this mean, and how does Oved hope to engage the vaccine community in this work? Oved refers to CDC estimates that there are about 4 million people in the US who are still experiencing “long COVID”, suggesting that the addition of those with a similar condition that emerged prior to COVID the number would be closer to 8 million.

“It’s a challenge because it’s an invisible disability.”

Another challenge for the industry and community is that “it’s a condition that has various manifestations”, necessitating a broader range of research approaches. However, with a “more intentional effort”, Oved thinks these challenges can be overcome.

“There are millions of people who are really waiting for better solutions.”

Solve at work

Oved has explained the importance of the work he and his team are taking on, so we asked a bit about what they are hoping to see in action. He responds that, as an organisation that predates COVID-19, they were “very concerned” during the early stages of the pandemic that it “may lead to the same outcome”. Thus, in the summer of 2020, the team started educating Congress to “appropriate more funding for research”. This ultimately led to the appropriation of over a billion dollars for NIH investigations into long COVID.

The Long COVID Alliance was co-founded by Solve M.E. to “use the collective influence and resources” of organisations and individuals to “transform our understanding of ‘long haul’ diseases”.

“Really it’s bringing the patient community together, but bringing other resources, government, public as well as the private sector, which is really needed to get to the point where we have more therapeutic options, vaccines, and treatments.”

The World Vaccine Congress

We are very much looking forward to Oved’s roundtable at the event in November, but what are he and his team looking forward to?

“We’re very much looking forward to the opportunity to engage with this community.”

Oved hopes to educate the vaccine community on the importance of incorporating these patients into research and planning.

“We hope to engage in a dialogue.”

In particular, Oved is looking forward to conversing with industry, which he feels has been missing from the post-infection community to date.

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