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IACFSME 2022 Virtual Medical Conference: Day 1 Workshops: 27 July (9 am to 5 pm EDT)

Discussion in 'ME/CFS research news' started by Science For ME, Jul 25, 2022.

  1. Science For ME

    Science For ME Forum Announcements

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    We have four threads, one for each day of the conference. Please add the following to these threads:
    * reports from forum members attending the conference
    * tweets and reports from other social media
    * your thoughts about the information presented.
    * any questions you would like asked of presenters

    IACFSME 2022 Virtual Medical Conference: Day 2 Presentations: 28 July (9 am to 5 pm EDT)
    IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)
    IACFSME 2022 Virtual Medical Conference: Day 4 Presentations: 30 July (9 am to 3.30 pm EDT)
    **************



    9.15 am - 11.15 am
    NIH Grant Writing Workshop: For Students, Fellows, Early Stage Investigators and Established Investigators.
    Vicky Whittemore, US National Institute of Neurologic Disorders and Stroke, USA
    Timothy Gondré-Lewis, US National Institute of Neurologic Disorders and Stroke, USA

    Caring for Long COVID Patients: Vancouver, BC, Canada and Palo Alto, CA, USA
    Hector Bonilla, Stanford University, USA
    R. Jane McKay, British Columbia Womens Hospital/ University of British Columbia, Canada
     
    Last edited by a moderator: Jul 27, 2022
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  2. Science For ME

    Science For ME Forum Announcements

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    11.30 am - 1.30 pm
    Patient/ Caregiver Perspectives on Research - Participation and Priorities
    Rochelle Joslyn, US National Institutes of Health ME/CFS Collaborative Research Centers Community Advisory Committee, USA;
    Jaime Seltzer; Susan Taylor-Brown

    Research updates on POTS
    Lauren Stiles, Dysautonomia International/ Stony Brook University, USA
     
    Last edited by a moderator: Jul 26, 2022
  3. Science For ME

    Science For ME Forum Announcements

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    3.00 pm - 5.00 pm
    ME/CFS and Long COVID Federal Advocacy Update
    Emily Taylor, Solve ME/CFS Initiative, USA
    BG Wright, Shea McCarthy, Thorn Run Partners, USA

    Occupational and physical therapy: increasing function & quality of life for ME/CFS patients
    Amy Mooney, Sallie Rediske, Melinda Maxwell

     
    Last edited by a moderator: Jul 27, 2022
  4. Hutan

    Hutan Moderator Staff Member

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    Hector Bonilla, MD; Stanford University, Stanford, CA, USA
    R. Jane McKay, BSP. MD. FRCPC, FACP: British Columbia Women’s Hospital, University of British Columbia, Vancouver

    This session ran for an hour which was really too long, as basically no one has much in the way of concrete information. There was little that will be news to members here.

    Definitions and statistics
    There was mention of various diagnoses of Long Covid, and the range of post-Covid conditions that can be covered by the term including organ damage, complications from hospitalisation, other effects such as Guillain Barre syndrome, and then there is Long Covid aka ME/CFS.

    There was mention of a few papers reporting prevalence including the UK Office of National Statistics Coronavirus Infection Survey which had 3% of people reporting any of 12 symptoms at 12 weeks; and the Chen 2022 paper that suggested that 43% of Covid cases become Long Covid cases. With 470 million global cases of Covid-19, that's 200 million cases of Long Covid. These wildly different numbers were presented without much comment, other than it's a big problem.

    Overall
    I got the impression that both Hector and Jane are doing their best to look after the patients in their care, and they both acknowledged the importance of pacing, the existence of orthostatic intolerance issues and the problems with graded exercise. I suspect though they both think they are achieving more than they actually are in terms of changing outcomes.

    Care in British Columbia
    Jane talked about the Post-Covid Interdisciplinary Clinical Care Network which has a lot of resources online. There are 5 Long Covid multidisciplinary clinics in BC, providing care up to the 18 month mark if needed. I did ask a chat question about what happens to patients after the 18 months, but it wasn't answered. Jane noted that they had started with very intensive services such as a lot of diagnostics but now just have a standard questionnaire, and now education is provided by allied health professionals. It was interesting to note a gender split for the BC clinics of almost 50:50, although the range of post-Covid issues may partly account for that.

    They have tried to integrate research with care, with bio banking and surveys. They have online education materials to build primary care capacity. They have multiple studies underway e.g Alyson Wong is characterising Long Covid phenotypes (these seemed very simplistic: only fatigue; fatigue and dyspnea; fatigue+depression +anxiety). Karen Tran is looking at 3 month clinical outcomes of patients. There was mention of an LDN study and investigation into blood clots.


    Is LC ME/CFS?
    Jane felt that this was a hard question to answer, that 'it is too early to state that there is a direct correlation. Mention was made of a Wong and Weizer paper. One of the few really interesting things I heard was that the patient group in BC has indicated that they don't want an ME/CFS label, that they 'don't want another diagnosis'. Someone asked if there are any ME patients on the patient (advisory?) group - and there isn't. Jane seemed to indicate that the patient group would have to be asked about that, and my impression was she didn't think there would be much appetite for that.

    Hector however, who I think comes at the problem having looked after ME/CFS patients before, is quite sure that Long Covid is the same as ME/CFS.

    Jane said 'we are really seeing the symptom burden declines at 12 months'. Hector however seemed to understand that most people get better but people still sick after a couple of years probably are at a plateau.

    Care in the US and Stanford
    Hector talked about the NIH RECOVER program. The Stanford clinic is very much a private clinic. Some of the slides seemed like an ad for the clinic - one had a list of nearly 20 medical specialists apparently on hand to help people. They have now seen 300 people with LC and the next available appointment is in October 2022. They have a standard questionnaire that does not explicitly include PEM as a question, only 'fatigue after activity', which seems pretty vague. Fatigue is the most common symptom, but the ME/CFS symptoms were all well represented. (Fatigue 88.6% female; 81.8% male. PEM 85% female; 80% male. ). I did ask how PEM is diagnosed, but that question wasn't answered. Only 6.8% were classified as severe.

    Hector presented statistics from 140 patients. Most of their patients are female and females have worse severity. Hector mentioned obesity as a risk factor about 4 times in the presentation; Stanford seems to have got NIH funding to investigate this. 35% of their LC patients have a BMI over 30.

    Treatments
    Hector mentioned that they are applying off-label therapeutic interventions, seemingly suggesting they have some ideas. Jane mentioned that they apply symptomatic treatments e.g. treatments for neuropathic pain. She acknowledged that there is no effective treatment.

    Ray Perrin asked extended questions a couple of times, which served as useful advertising for him. He had Jane and Hector nodding along with his suggestions about the importance of the glymphatic system.
    Dr Frederiks? talked about his theories about ACE2 and patients responding to a drug that I didn't catch the name of. There was a question about psychedelics as a treatment; neither Jane nor Hector claimed expertise in this.

    There was some comment about the importance of educating doctors. Hector said that there had been negligence for many years, and this has created the problem we have now.
     
    Last edited: Jul 31, 2022
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  5. Trish

    Trish Moderator Staff Member

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    Location:
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    11.30 am - 1.30 pm
    Patient/ Caregiver Perspectives on Research - Participation and Priorities
    Rochelle Joslyn, US National Institutes of Health ME/CFS Collaborative Research Centers Community Advisory Committee, USA;
    Jaime Seltzer; Susan Taylor-Brown

    A well run session with half hour talks from Jaime Seltzer and Rochelle Joslyn, followed by 'discussion'. Their talks were based on their work as members of the Advisory committee shown above. It was aimed at researchers.

    Topics and suggestions were all very much in line with what we discuss on the forum, nothing particularly new, but well thought out and worth saying to researchers to try to improve the quality of research.

    Jaime Seltzer focused on recommendations for researchers in the design of clinical studies and the incorporation of patient partners in ME/CFS research.

    It was all set out in detailed slides that she went through quickly, so I can't reproduce it all, but will list some key aspects she raised:

    On patient involvement in research teams:
    - Importance of including patients at all stages in research, and building their involvement into funding bids and accommodations needed to enable pwME to contribute.
    - positive benefits of patient involvement include shaping the design, their role as early ambassadors and for recruitment, accountability, legitimacy, improving the quality and accessibility of reseach, eg how to reach severe and less well represented socio economic and ethnic participants.
    - the need to ensure diversity in patient reps involved in planning research
    - where and how to recruit patients to a research team - through patient groups,
    - over recruit and make time scale clear, allocate funding and pay as consultants to the research, long term relationships for future research, clear expectations, flexibility in timing and methods, eg short meetings.

    On recruitment of study participants:

    - Use other sedentary groups as controls
    - include severe - accommodation with home visits, giving online access in advance to questionnaires etc.
    - Strategies for including under represented groups - provide finance and home visits, child care - widen methods of outreach
    - Use de Paul questionnaire as initial filter before expert assessment especially with shortage of expert clinicians

    Rochelle Joslyn
    Gaps and opportunities - mecfs research in thr age of long covid

    I'll write this up later. Another session to watch.


     
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  6. Trish

    Trish Moderator Staff Member

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    Occupational and physical therapy: increasing function & quality of life for ME/CFS patients
    Amy Mooney, Sallie Rediske, Melinda Maxwell

    I managed about 1 hour 15 minutes of this 2 hour session, then couldn't take any more physically or cognitively. Not their fault, just my limitations.

    It was unfortunate that they spent about the first hour explaining what OT's and PT's do and then what ME is, what PEM is and that you shouldn't do GET/CBT based on the cognitive behavioural model. I'm not sure who the intended audience was for this. It was well presented but all pretty basic. Maybe trying to convince clinicians that OT's and PT's have an important role to play in care of pwME.

    At about 1 hour 6 minutes the OT doing most of the presenting finally got around to starting to describe how OT's and PT's should treat pwME, which looked like being more interesting, but my energy ran out.

    I will try to go back and watch the rest when we get access to the recordings.
     
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  7. Hutan

    Hutan Moderator Staff Member

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    Above, I mentioned that Hector Bonilla is suggesting that obesity is a predisposing factor in Long Covid. It's often tempting to point at risk factors that seem to be under the sick person's control. But, we need to know what the prevailing population rates are for these factors.

    wikipedia
    So, it appears then that the rate of obesity in patients with Long Covid at the the Stanford clinic is, if anything, lower than the prevailing rate in the population. There's no evidence to support spending scarce research funds on an investigation about how obesity could be affecting Long Covid risk. Hopefully the NIH has not made such a basic error, and the study has not yet been finalised.
     
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  8. Andy

    Andy Committee Member

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  9. Trish

    Trish Moderator Staff Member

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    Here's the rest of my report on this session:

    11.30 am - 1.30 pm
    Patient/ Caregiver Perspectives on Research - Participation and Priorities
    Rochelle Joslyn, US National Institutes of Health ME/CFS Collaborative Research Centers Community Advisory Committee, USA;
    Jaime Seltzer; Susan Taylor-Brown

    Rochelle Joslyn
    Gaps and opportunities - ME/CFS research in thr age of long covid

    Rather than write up my rather sketchy notes on this session, I refer readers to the report it was based on:

    ME/CFS Research Priorities

    Community Advisory Committee, Research Priorities Working Group NIH ME/CFS Collaborative Research Centers May 3, 2022
    https://cfsformecfs.files.wordpress.com/2022/05/final-public-cac-me_cfs-research-priorities.pdf
    https://cfsformecfs.org/2022/05/10/...ttee-develops-priorities-for-me-cfs-research/
    The authors of this guide are: Mary Dimmock, Rochelle Joslyn (chair), Sabrina Poirier, Jaime Seltzer and CAC Director, Allison Kanas.


    The 10 page pdf outlines key aspects, listed below, which Rochelle summarised in her report.

    It's done in the context of being the community advisory group to the NIH funded ME/CFS research centres, so also focuses on things like barriers to research, research methods, collaboration, and instruments (questionnaires, physical and cognitive tests, and biomedical tests) used to measure outcomes.

    Here are the headings and a few key points:

    Upstream Barriers to Successful ME/CFS Research
    Key barriers that must be addressed include:
    Case Criteria and Selection Methods
    Objective Biomarkers and Measures
    Complexity and Heterogeneity of the Disease - including multi systems, age and sex, fluctuations, severity levels, comorbidities, heterogeneity of symptoms, unrepresentative recruitment from different social and ethic groups.
    Inadequate Instrumentation, Study Design, and Study Approaches, eg inappropriate questionnaires
    Lack of growth of the field -
    Academic Institutions, Clinicians, Researchers, and Funding


    Short Term Research Priorities
    Collaborative Approaches - detailed suggestions to improve this

    PASC Integration
    Suggestions for mutual research gains from including Long Covid in ME research and vice versa

    Consensus Meetings
    'Hold a series of federally funded meetings among federal agencies and ME/CFS expert researchers, clinicians, patients, and caregivers to achieve consensus on':
    ● Core Selection Criteria and Assessment Methods to be used in all research studies
    ● Illness Severity and BIPOC populations
    ● Major Subtypes
    ● Methods
    ● Outcome Measures

    Methods and Study Design

    Biomarkers

    Clinical Treatment Trials

    Epidemiological and Longitudinal studies

    Advance Understanding of Disease Pathology

    Clinical Studies to Demonstrate Disability

    ME/CFS Targeted Funding and Research Strategic Plan

    Longer Term Research Priorities

    Methods Development

    Advance Disease Knowledge

    Clinical Treatment Trials

    Epidemiological and Longitudinal studies

    Data Capture and Sharing
    ________________

    I hope this report leads to better targeted and more productive research. It all sounds very positive, but requires the funding and the will to act on it.

    (It looks to me to be a much more in depth and useful exercise than the UK Priority Setting Partnership which had a limited remit of only listing 10 priorities for research topics and did not allow for discussion of research methodology).
     
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  10. Andy

    Andy Committee Member

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  11. Andy

    Andy Committee Member

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    Location:
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  12. Andy

    Andy Committee Member

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  13. Trish

    Trish Moderator Staff Member

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    As far as I could gather from his presentation, Hallman is a pwME who is working towards a PhD with various interview based ME/CFS studies. His background is not clinical. He did a short talk on one of his studies and poster presentations on 3 others.
    _________________________

    A general comment on poster presentations:

    I didn't manage to visit many of the poster presentations in the conference online space, but participants have been sent abstracts of all the in person and poster presentations, so I've glanced through the headings.

    The posters included some pretty dubious stuff, such as yoga, wasabi extract and Gupta amydala treatments. Personally I think they should be much more selective about who they allow to present posters (and in talks), as that enables some quacks to claim they have presented at scientific conferences, even when all they've done is a poster or two about a study that hasn't happened yet.
     
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  14. Art Vandelay

    Art Vandelay Senior Member (Voting Rights)

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    He's also the current Chair of ME/CFS Australia.
     
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  15. Hutan

    Hutan Moderator Staff Member

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  16. ahimsa

    ahimsa Senior Member (Voting Rights)

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    During the conference volunteers live-tweeted during several of the conference sessions using the forum's twitter account, s4me_info.

    This post is a copy of notes made during the July 27 session at 9:15 AM, NIH Grant Writing Workshop: For Students, Fellows, Early Stage Investigators and Established Investigators, presented by Vicky Whittemore.

    At the end there's a brief comment on another session held at the same time, Caring for Long COVID Patients: Vancouver, BC, Canada and Palo Alto, CA, USA, presented by Hector Bonilla.

    All notes were taken from this twitter thread (link in quoted section):
    === start of comments ===

    In the first workshop Vicky Whittemore of the US National Institute of Neurologic Disorders and Stroke (NINDS) is presenting information on the different types of NIH grants with tips and advice for submitting successful applications.

    Whittemore stresses that it is important to talk with NIH staff before submitting a grant because they can give advice e.g. on which type of funding opportunity is most suitable. “We don’t hear from people enough before they submit their grant.”

    Whittemore also highlights the importance of describing research aims clearly. Young investigators usually submit proposals that are too complex or ambitious – it is often better to have realistic timelines and focus on something specific.

    Another thing to be mindful of is to have aims that are not too interdependent. An example: If Part II and Part III depend on the results of Part I of your proposal, then the whole project might fail if Part I is unsuccessful.

    Having preliminary results is not always necessary but often useful to demonstrate feasibility: it helps to shows that the project can be done by the research team.

    According to Whittemore, only about 20 per cent of grants submitted to the NIH are funded.

    Rejection is the rule not the exception. It’s important to not give up and keep trying.

    The second part of this workshop is presented by Tim Gondré-Lewis of the National Institute of Allergy and Infectious Diseases (NIAID).

    His talk focuses on specific training, fellowship and transition grants for young researchers

    During the Q&A IACFS/ME chair Fred Friedberg argued that the NIH are more open to funding ME/CFS research than ever, going back to the 1980s and 1990s.

    Friedberg asked Whittemore what the rate of funding is for ME/CFS-specific grants and she replied that these are as good or even better than the overall NIH success rate of approximately 20%.

    At the same time a second workshop was held by Hector Bonilla (Stanford University) and Jane McKay (University of British Columbia) on caring for Long COVID Patients.

    Encouraging to see how the (virtual) room was filled with attendees for this workshop.

    === end of comments ===
     
    Last edited: Aug 2, 2022
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  17. ahimsa

    ahimsa Senior Member (Voting Rights)

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    EDIT: Corrected an error - added full list of presenters for one of the sessions.

    More notes from the @s4me_info twitter thread.

    This post is copied from tweets made during the July 27 session at 11:30 AM, Dysautonomia, presented by Lauren Stiles.

    At the end there's a brief comment on another session held at the same time, Patient/ Caregiver Perspectives on Research - Participation and Priorities, presented by Rochelle Joslyn, Jaime Seltzer, and Susan Taylor-Brown.

    === start of comments ===
    Lauren Stiles, the president and co-founder of Dysautonomia International, is now presenting a workshop on various forms of dysautonomia.

    Stiles argues that dysautonomia is part of many diseases and that before the corona pandemic at least 13% of the US population was estimated to have some form of dysautonomia.

    A few ME/CFS researchers have used a simplified “lean test” but Stiles says that this approach has not been validated against a more formal tilt table test that forms the basis of POTS diagnostic criteria.

    The simpler ‘lean test’ has sometimes been called the ‘NASA lean test’, but Stiles explains that NASA abandoned this test 30 years ago because it wasn’t reproducible.

    Validation studies are needed to compare it against tilt table testing.

    Stiles also discussed the overlap between postural orthostatic tachycardia syndrome (POTS) and ME/CFS.

    Her slides stated that 48%-77% of POTS patients have ME/CFS while 19%-70% of ME/CFS patients are believed to have POTS.

    But Stiles added that most patients with POTS without ME/CFS still suffer from severe fatigue.

    Similarly, many patients with ME/CFS but without POTS might have other forms of dysautonomia.

    In her view, there is an important overlap between dysautonomia and severe fatigue that is not fully captured by current diagnostic criteria.

    Stiles also discussed three exercise studies on POTS patients.

    In her view, these showed that the patients who could do the exercises, are helped by it.

    But there were also major issues with some of these studies...

    Stiles told that she was enrolled as a participant in one of these studies but that the authors weren't interested in her data because the treatment did not work well. So big question marks on this study.

    Stiles also explained that there is a collaboration with experts from different diseases to come up with a POTS rehab protocol that takes account of co-morbidities such as ME/CFS.

    The goal is a protocol that is flexible enough to serve patients with a wide range of disabilities.

    Meanwhile in the other hall, there was a workshop on patient and caregiver perspectives on ME/CFS research. It was presented by members of the Community Advisory Committee for the NIH Collaborative Research Centers: Rochelle Joslyn, Jaime Seltzer, and Susan Taylor-Brown.

    === end of comments ===
     
    Last edited: Aug 1, 2022
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  18. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I thought I'd add a quick note on the NASA Lean Test and the need to validate it as a useful tool.

    Lucinda Bateman from the Bateman Horne Center has a blog post talking about this test, Why the 10-Minute NASA Lean Test? A short excerpt:
    That said, even though the NASA lean test is more accessible to a lot of patients than a tilt table test, I've read comments from a couple of doctors who have said that it would miss certain types of orthostatic intolerance that would be picked up by a tilt table test.

    I don't have a stake in this debate! I just wanted to provide some information on why certain researchers are using the NASA lean test.
     
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  19. Hutan

    Hutan Moderator Staff Member

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    I think a risk is that the lean test is done once in a doctor's office, and it is perfectly normal and that is the end of any discussion about orthostatic intolerance. Certainly with me, my results fluctuate a lot. Yes, we need validation of the test as discriminating between people with OI symptoms and those without. But any validation should consider multiple testing (e.g. daily testing, testing throughout the day).

    I think a month of the measure of mean and variation of change in BP and heart rate from a daily lean test done upon rising from bed in the morning, with results correlated against symptoms is a lot more likely to be useful than a single test in a doctor's office done on the day you were well enough to actually get to the doctor's office.
     
    Last edited: Aug 1, 2022
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  20. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Many years ago, before I had any diagnosis (early 1990s), several doctors did routine checks of heart rate and blood pressure - taken while lying down, then sitting, then standing. My results were always normal. I was declared free of all issues with my blood pressure or heart rate.

    Then in January 1995, on the tilt table test, I passed out after 20 minutes.

    So I completely agree that it's bad to have a less sensitive test that shows "normal" and then all line of inquiry into that area stops! That happened to me for years!

    That old test the doctors did on me was good at picking up OH (an initial drop in blood pressure when you first stand up). And it might pick up some cases of POTS if the standing part is long enough. But it does NOT detect a delayed drop in blood pressure.

    I wish there was more testing, and better testing, for orthostatic intolerance in all ME/CFS patients. But I also know it is hard for ME/CFS patients to get ANY testing at all. Pushing for a tilt table test, which costs a lot more, can be difficult. I don't know the answer.
     
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