Attitudes of incoming US politicians to ME/CFS and post-Covid 19 illness

https://www.statnews.com/2020/11/09/biden-transition-team-unveils-members-of-covid-19-task-force/

I did a superficial search to find out whether any of them had anything to do with ME/CFS. One of them does. Robert Rodriguez is principal investigator in a multi site observational study of covid 19 where the primary outcome measure is incidence of ME/CFS. That's a weak connection but at least the possibility of ME/CFS will be on his mind.

https://ichgcp.net/clinical-trials-registry/NCT04610515

 

Osterholm (if it's the same person) here says on long covid

https://edhub.ama-assn.org/jn-learning/video-player/18544334

 

That only means he hasn't seen any severe ME cases.

Still, there are no cases of LongC being reported that are anywhere near severe ME (being bedbound in darkness, being tube fed, unable to speak or being touched etc.).

 

Including death after 18 years of illness as was the case with my best friend.

 

I thought that the comment from Osterholme probably indicated that he is unfamiliar with "CFS" case arising after acute viral illness. From what I have heard of some "long haulers" they sound absolutely typical. This does not bode well.

 

More like without steroids but I get the idea.

 

Details below.

Basically, they aim to recruit a lot of people with a positive diagnosis for SARS-COV2 and follow them for 18 months, with ME/CFS as the primary outcome. (I think that's quite a strong connection with ME/CFS.)

Innovative Support for Patients With SARS-COV2 Infections (COVID-19) Registry (INSPIRE)
Innovative Support for Patients With SARS-COV2 Infections (COVID-19) Registry (INSPIRE)

Sponsors
Lead Sponsor: Rush University Medical Center

Collaborator: Yale University
University of Washington
Thomas Jefferson University
University of California, Los Angeles
University of California, San Francisco
University of Texas Southwestern Medical Center
The University of Texas Health Science Center, Houston

Source Rush University Medical Center
Brief Summary
This study will use a digital platform to longitudinally track comprehensive information including patient self-report as well as data that describe the process and outcome of care in the electronic medical record (EMR) of a large representative sample of patients under investigation for SARSCOV2. The objective is to generate knowledge rapidly using digital tools and collaborative sciences to produce real-time data, analysis, and reporting compared to more traditional approaches. An additional goal is to promote an open science approach whereby scientists, with proper approvals and in line with the permissions granted by the participants, have the opportunity to work with data in ways that protects individual privacy but promotes rapid dissemination and implementation of knowledge.

Overall Status Not yet recruiting
Start Date November 14, 2020
Completion Date November 14, 2022
Primary Completion Date November 14, 2022
Study Type Observational [Patient Registry]

>> Primary Outcome

Incident myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) 18 months post enrollment<<

Secondary Outcome
Measure Time Frame
Ambulatory care and/or ED visits post enrollment 18 months post enrollment
Hospitalizations post enrollment 18 months post enrollment
Death during hospital admission 18 months post enrollment
Hospital-free survival 18 months post enrollment
ICU-free survival 18 months post enrollment
Enrollment 4800

Condition

• Covid19
• ME/CFS
• SARS COV2
• Novel Coronavirus Infection
• Neurocognitive Disorders
• Cardiovascular Diseases

Eligibility
Sampling Method: Non-Probability Sample

Criteria:

INCLUSION CRITERIA 1. Fluent in English or Spanish; 2. Age 18 and over; 3. Self-reported symptoms suggestive of acute SARSCOV2 infection; 4. Under investigation for SARSCOV2 (defined as a patient who has received any screening or diagnostic test used to detect the presence of COVID19 including any FDA approved or authorized molecular or antigen-based assay) within the last 28 days. EXCLUSION CRITERIA 1. Unable to provide informed consent; 2. Study team unable to confirm result of diagnostic test for SARSCOV2; 3. Does not have access to a hand-held device or computer that would allow for digital participation in the study; 4. Individuals who are prisoners while participating in the study.

We've created a new thread for this study, here:
US: INSPIRE Innovative Support for Patients with Covid-19 Registry (ME/CFS outcome measure)

 

To me this is an example of the denigration of ME/cfs. PwCfs are fatigued. LC people have that and so much more (the 'on steroids' comment). That 'on steroids' tells us where PwME are in the order of severity of illness. This man has no clue about ME.

 

It's quoted a bit out of context. With the on steroids part he seems to mean lung and heart problems. So he appears to saying it's like CFS but with lung and heart problems. He says

 

That is strange terminology. Patients with clearly identifiable lung or cardiac problems would not normally be considered candidates for a diagnosis of CFS, whether on steroids or not. It would be the ones with negative tests who resemble the "CFS" like picture.