Long COVID Action Canada

Letter to HAHSO

Sent 11 October 2026.

Accessible text version. The letter’s wording is retained; repeated page headers and footers are omitted.

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11 October 2026

To: Sarah Bouma and Dr. Ahmed Khan, Hamilton Academic Health Sciences Organization (HAHSO)
Re: FALCON funding - follow-up on my 23 August 2026 inquiry (NCT07697261)

Dear Sarah Bouma and Dr. Ahmed Khan,

I am writing for Long COVID Action Canada to follow up on my 23 August 2026 email about funding for FALCON (NCT07697261), McMaster's trial comparing activity pacing with the Lightning Process for Long COVID. Clare Mitchell replied that day, saying she no longer worked for HAHSO and forwarding my inquiry to you. I am requesting a substantive written response.

Dr. Jason Busse's August correspondence identified HAHSO funding of $188,904. The source and reported amount are therefore already part of the record. I am seeking details of the award's conditions, assessment, oversight and transparency.

ClinicalTrials.gov, checked on 8 October 2026, lists FALCON as "Not yet recruiting," with an estimated November 2026 study start. The record was last updated on 13 July. This is the published registry information, not confirmation of current enrolment. Clarity before recruitment would help patients understand how the concerns raised are being considered.

Please address the following:

1. Responsibility for the inquiry.

Which person or office received the August referral, and who is responsible for responding? Please describe any consideration undertaken so far and indicate when a substantive response can reasonably be expected.

2. The award and its conditions.

Please confirm the reported amount and identify the grant stream, award reference, funding period and applicable terms. What conditions govern scientific review, participant protections, changes to the study and release of funds? Links to relevant policies and a shareable summary of the award conditions would be helpful.

3. Review, oversight and independent scrutiny.

What scientific or methodological assessment informed the funding decision, and what patient involvement was considered? What process allows HAHSO to consider concerns raised after an award? Please explain the respective responsibilities of HAHSO, the institution, investigators and the research ethics board, including reporting or reassessment requirements. Within its funding role, what can HAHSO do to support an independent scientific, ethical and patient-led review of the design, participant protections and relevant commercial relationships before recruitment?

4. Payments and relevant interests.

Busse has described payments to therapists at their usual hourly rates. Please clarify what the approved budget provides for contracted practitioners, training, licensing or intervention materials, where applicable. What financial and non-financial interests were disclosed by applicants and relevant reviewers, and how are they assessed or managed?

5. Public documents before recruitment.

What does this award require concerning publication of the full protocol and statistical analysis plan? LCAC is asking that both be public before recruitment. Can HAHSO support that timing, and explain any existing expectations about publication, disclosure and dissemination? If documents are already available, please provide links. Please also explain whether concerns arising from those documents can be referred for further assessment.

LCAC's record acknowledges investigator replies and HiREB's acknowledgment of our concerns. Those communications have clarified some matters; they do not by themselves establish that the outstanding requests have been fulfilled. Funding oversight and ethics review have distinct responsibilities, and I am seeking a clear account of HAHSO's role.

Please acknowledge receipt and confirm that this has reached the responsible office. I would appreciate a substantive written response by 22 October 2026, ahead of the estimated November start. If that timing is not feasible, please indicate when you can respond. I would welcome a response suitable for inclusion in the public campaign record. If a question belongs elsewhere, identify the responsible office while addressing the matters within HAHSO's remit. Please distinguish steps already completed from proposed actions.

People with Long COVID need research they can assess and trust. Clear answers would help.

Thank you for considering these requests.

Sincerely,
Robert DeRosa
Founder, Long COVID Action Canada
Long COVID patient advocate

robert@longcovidaction.ca longcovidaction.ca

Referenced records