1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, 2024, Kathleen Mudie et al

Discussion in 'ME/CFS research news' started by Tom Kindlon, Aug 4, 2022.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,203
    Last edited by a moderator: Mar 13, 2024
    Tom Kindlon, Aug 4, 2022
    #1
    Binkie4, Simon M, serendipity and 3 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,512
    Location:
    London, UK
    It looks as if this has come from staff at Solve ME. If so it is very disappointing to see such a muddle from a support/funding group.

    It isn't very clear from the slides but it looks as if the hypermobile people are only different in that they self-report diagnoses associated with hypermobility! And another study showed nothing.
     
    Jonathan Edwards, Aug 4, 2022
    #2
    Cheshire, TrixieStix, FMMM1 and 7 others like this.
  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,255
    I'm assuming that by "significant differences" they mean those that were statistically significant. These were:

    Self-reported EDS
    Family history of EDS
    Self-reported POTS
    Loss of balance, unsteadiness on feet when standing or inability to focus vision

    There are some other differences listed, presumably the ones not reaching statistically significant differences.
     
    Last edited: Aug 4, 2022
    Hoopoe, Aug 4, 2022
    #3
    Cheshire, Michelle, hibiscuswahine and 2 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    52,337
    Location:
    UK
    Looking at the slides, there are a lot of assumptions being made about people with joint hypermobility also having problems throughout their bodies with connective tissue, and hypotheses about this linking with POTS and cranial hypertension. I thought that only applied to people with the rare genetic severe form of EDS. ???

    There is a slide about this study we have a thread on here:
    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al
    The slide says:
    Then the slide about the self reported data from the Solve study:
    It's not clear whether the 12% refers to the population prevalence comparitor they are using, or to the result from their data.
    The next slides indicate self reports of Joint hypermobility and EDS are raised. And they go on to link these with POTS and OI symptoms.

    Unfortunately I think none of our team managed to watch the presentation as it was at the end of a long day. Once we get the videos we'll be able to report more fully on what was actually said about the data.

    I've done some searching on Twitter to see whether anyone had reported on this talk. This was the only tweet I found:
    https://twitter.com/user/status/1552753336780218370

    The tweet says:
    Results are still in early stages. Have not yet seen statistically significant subgroup based on JH+.

    I looked at the abstract provided to participants for this talk. It says nothing about hypermobility, it's just a general abstract about the future research use of the patient data from the registry.
     
    Trish, Aug 4, 2022
    #4
    Cheshire, Michelle, hibiscuswahine and 4 others like this.
  5. Andy

    Andy Committee Member

    Messages:
    21,962
    Location:
    Hampshire, UK
    Quite different results to those reported in this study then, Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    Bragee et al reported 49% of 229 patients presented with joint hypermobility, compared to the 18% of the 687 patients here.

    In other, more general, studies
    26% of 388 students aged 18-25 presented with joint hypermobility
    30% of 1006 members of the Danish population presented with joint hypermobility
    27% of girls and 10% of boys in a study of 6,000 UK children presented with joint hypermobility
     
    Andy, Aug 4, 2022
    #5
    ME/CFS Skeptic, Lilas, Michelle and 5 others like this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    52,337
    Location:
    UK
    I've now watched the presentation. The 12% is the proportion of the ME/CFS patients in the Registry who may have hypermobility based on Beignton scores. She did point out this is only an indicator of hypermobility, not a clinical test.
    Given that is towards the lower end of estimates she quoted from population studies for the general populatlon, I don't see how joint hypermobility can be a predisposing factor for ME/CFS, therefore a subgroup, though I can see that pwME who happen to have hypermobile joints may have some joint pain and attribute it to both conditions.
    My notes on the talk are here:
    https://www.s4me.info/threads/iacfs...uly-9-am-to-5-pm-edt.28754/page-2#post-432961
     
    Trish, Aug 16, 2022
    #6
    Mithriel, rainy, Grigor and 4 others like this.
  7. glennchan

    glennchan Established Member

    Messages:
    11
    glennchan, Sep 17, 2022
    #7
    Peter Trewhitt likes this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,512
    Location:
    London, UK
    On what basis do you say that? Was there any analysis of hypermobility in the study?

    Edit: the word hypermobility does not appear in the paper.

    What has that got to do with Covid vaccine anyway?
     
    Last edited: Sep 17, 2022
    Jonathan Edwards, Sep 17, 2022
    #8
    Hutan, FMMM1, ladycatlover and 6 others like this.
  9. CRG

    CRG Senior Member (Voting Rights)

    Messages:
    1,857
    Location:
    UK
    Das et al is discussed here: https://www.s4me.info/threads/genet...al-analysis-2022-das-et-al.29445/#post-436520 and here https://www.s4me.info/threads/blog-new-study-links-14-genes-to-me-cfs.29511/#post-437195
     
    CRG, Sep 17, 2022
    #9
    Hutan, Peter Trewhitt and Trish like this.
  10. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,675
    Seriously? Nothing can be said about data collected that way. We can't criticise the PBS crowd and do worst than them.
     
    Cheshire, Sep 17, 2022
    #10
    Hutan, ladycatlover, Lilas and 2 others like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    52,337
    Location:
    UK
    This looks like nonsense. The SolveME registry data shows no increase in hypermobility over population rates, as did the UK ME/CFS biobank data. So your 'points to' conclusion doesn't follow. In fact the data says the opposite of your hypothesis.
    As for your 'data' on vaccine injury and hypermobility - you have said yourself it's not scientifically valid, so why publicise it?
     
    Trish, Sep 17, 2022
    #11
    Hutan, ladycatlover, RedFox and 5 others like this.
  12. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,255
    I'm pretty sure there is something abnormal going on with the joints of a subgroup of patients but it's not showing up in controlled studies designed to detect an assocation between hypermobility and ME/CFS. That could mean it's a very small subgroup or that there is no association with ME/CFS or that joint hypermobility is too unspecific a criterium to detect it.

    I say pretty sure because the descriptions sound abnormal. I never quite understood what precisely the patients are describing.

    It's also possible that hypermobility as defined in these studies is a largely normal trait in the population that has had a false theory built around it. Attributing the problems with regulating blood pressure to connective tissue laxity seems like an intuitive explanation. Perhaps the people who really have more a POTS phenotype and also have some benign hypermobility just got it wrong.
     
    Last edited: Sep 17, 2022
    Hoopoe, Sep 17, 2022
    #12
    EndME, Hutan, Michelle and 4 others like this.
  13. glennchan

    glennchan Established Member

    Messages:
    11
    If there is a higher incidence of hypermobility and there is a genetic basis for that hypermobility, then it would show up in the GWAS study.
     
    glennchan, Sep 27, 2022
    #13
    Peter Trewhitt likes this.
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,512
    Location:
    London, UK
    Yes, but there is no reliable evidence for a higher incidence of hypermobility.
     
    Jonathan Edwards, Sep 27, 2022
    #14
    cfsandmore, RedFox, FMMM1 and 2 others like this.
  15. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    8,332
    Merged thread

    Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data, 2024, Kathleen Mudie et al

    Background:     Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, multifaceted disease that affects millions globally. Despite its significant impact, the disease's etiology remains poorly understood, and symptom heterogeneity poses challenges for diagnosis and treatment. Joint hypermobility, commonly seen in hypermobile Ehlers-Danlos Syndrome (hEDS), has been observed in ME/CFS patients but its prevalence and clinical significance within this population are not well-characterized.

    Objective: To compare the characteristics of ME/CFS patients with and without joint hypermobility (JH+ and JH-) as assessed using the Beighton scoring system, and to explore whether JH+ ME/CFS patients exhibit distinct disease characteristics, comorbidities, and health-related quality of life (HRQOL).

    Methods: The study used cross-sectional, self-reported data from 815 participants of the You + ME Registry. Participants were categorized as JH+ or JH- based on self–assessed Beighton scores and compared across demographics, comorbidities, family history, and symptoms. HRQOL was assessed using the Short Form-36 RAND survey and Karnofsky Performance Status.

    Results: 15.5% (N = 126) of participants were classified as JH+. JH+ participants were more likely to be female, report Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and a family history of EDS. They experienced worse HRQOL, particularly in physical functioning and pain, and a higher number of autonomic, neurocognitive, headache, gut, and musculoskeletal symptoms. Sensitivity analysis suggested that ME/CFS with concurrent JH+ and EDS was associated with more severe symptoms and greater functional impairment.

    Conclusion: ME/CFS patients with joint hypermobility, particularly those with EDS, demonstrate distinct clinical characteristics, including more severe symptomatology and reduced HRQOL. These findings highlight the need for comprehensive clinical assessments of ME/CFS patients with joint hypermobility. Understanding these relationships could aid in subgroup identification, improving diagnosis, and informing targeted therapeutic approaches. Further research is warranted to explore these associations and their implications for clinical practice.

    https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1324879/full
     
    Last edited by a moderator: Mar 13, 2024
    Mij, Mar 13, 2024
    #15
    Sean, Peter Trewhitt and Dolphin like this.
  16. Evergreen

    Evergreen Senior Member (Voting Rights)

    Messages:
    260
    Oh no! I was just about to post a big long thing on the Mudie study, but it wouldn't let me post it, I'm guessing because the threads were being merged. It is now lost, and I have to rest. You'll have to imagine how insightful it was.;)
     
    Evergreen, Mar 13, 2024
    #16
    ME/CFS Skeptic, Sean, Peter Trewhitt and 1 other person like this.
  17. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,107
    Dolphin, Mar 21, 2024
    #17
    Sean and Peter Trewhitt like this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,107
    ME Research UK

    ·
    The heterogeneity of ME/CFS, as evidenced by diverse symptom profiles
    potentially signifying variations in disease mechanisms, presents a
    challenge in the development of a diagnostic test and treatments. A
    recent cross-sectional study (https://bit.ly/3xA7S4B), involving over
    800 ME/CFS participants, explored this heterogeneity in relation to
    the presence or absence of joint hypermobility. The findings revealed
    ME/CFS participants with concurrent joint hypermobility, particularly
    those with Ehler’s Danlos syndrome (EDS), “demonstrate distinct
    clinical characteristics, including more severe symptomatology and
    reduced [health-related quality of life] HRQOL.”

    Read more: https://tinyurl.com/msr5m8fb

     
    Dolphin, Apr 10, 2024
    #18
    Peter Trewhitt and Trish like this.

Share This Page