More than 50 members of Congress, from both parties and both chambers,
sent a letter to Secretary Collins this week asking the VA to add inclusion body myositis to its list of presumptive conditions. The disease is rare, progressive, and incurable. It destroys muscle in the thighs, forearms, and throat until walking, gripping, and swallowing go. More than 6,700 veterans are in VA care for it, up 221% since 2010, and the Myositis Association says it shows up in veterans at rates well above the general population.

The VA's answer, through its press secretary, was that veterans can already get benefits for IBM by proving service connection individually. That's true. It's also the problem.
Why ALS is presumed and IBM isn't
In 2008, after studies showed veterans developed ALS at roughly twice the civilian rate for reasons nobody could pin to a single exposure, the VA did something unusual: it made ALS presumptively service-connected for any veteran with 90 days of continuous active service. No nexus letter, no exposure proof, no fight. The VA couldn't explain the link, so it stopped making veterans explain it.
We wrote about that rule and the 100% rating that follows it.
IBM sits in the same category of evidence. Elevated rates in veterans, no identified mechanism, a disease that looks and progresses like ALS to the people living with it. The National Academies is studying links between toxic exposures and neurodegenerative conditions including IBM, with results expected in 2027. The lawmakers' letter argues the VA shouldn't wait for it, and that the ALS precedent already answers the question of what to do when the pattern is clear and the cause is unknown.
What "prove it individually" means in practice
The Marine the Stars and Stripes story follows, a two-time Gulf deployer, spent years being told by VA doctors that his fatigue, trouble standing, and migraines were something else, got the IBM diagnosis from a private immunologist in 2025, and watched his wife's caregiver application get denied. That's the individual process working as designed. IBM is misdiagnosed as polymyositis or written off as aging for years on average, which means the service treatment records rarely say "IBM," and the VA's nexus question, whether it's at least as likely as not that service caused it, has to be answered for a disease with no known cause.
The Myositis Association reports a high denial rate and long appeals. We'd add that the claims that win tend to win on one of three theories: a toxic-exposure argument under the PACT Act's framework for conditions not on the list, which requires the VA to weigh the exposure evidence it holds; a secondary theory where IBM is tied to another service-connected condition or its treatment; or a direct theory built on a specialist's opinion that engages with the veteran-rate studies. None of those is quick. A presumption would make all three unnecessary.
What a presumption would and wouldn't do
If the VA adds IBM, a veteran with the diagnosis and the minimum service would be granted without proving the link, and the effective date rules for new presumptives would govern back pay, which for a disease this disabling can be years of compensation at the top of the schedule. It would also open DIC for survivors of veterans who've already died of it, under the same rule that applies when a condition becomes presumptive after death.
What it wouldn't do is happen fast. The VA can add presumptives by regulation on its own, which is how the ALS rule was made, or Congress can legislate one, which is how most of the PACT Act list arrived. A letter from 50 members is neither. It's pressure, and the VA's response this week was the response of an agency that isn't planning to move until the National Academies reports.
If you or a family member has IBM
Don't wait for the presumption. File now, on the strongest of the three theories your record supports, because the effective date of a later presumption may reach back to a pending claim and won't reach back to one you never filed. Get the diagnosis in writing from the specialist who made it. Get the service treatment records for the earliest complaints, the weakness that got called deconditioning, the falls, the swallowing trouble, and have the specialist speak to when the disease likely began. If you deployed, document the exposures. And if the VA has already denied, understand that a denial on a direct theory doesn't close the exposure or secondary theories, and that
the appeal lanes exist for exactly this kind of case.
For the caregiver denial in the Stripes story and others like it:
caregiver program decisions are appealable, and a veteran with progressive IBM is close to the textbook case for the program.
Where we come in
We're a veteran-led firm, and rare-disease claims that turn on a specialist's opinion and a veteran-rate study are part of our appeals work. If IBM has been diagnosed and the VA has said no, or hasn't said anything,
reach out.
