1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Newton et al: POTS Clinical Characteristics of novel subgroup CFS

Discussion in 'Latest ME/CFS Research' started by Firestormm, Dec 5, 2012.

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Clinical characteristics of a novel subgroup of chronic fatigue syndrome patients with postural orthostatic tachycardia syndrome

    Accepted on-line 4 December 2012
    1. Ieuan Lewis1,
    2. Jessie Pairman2,
    3. Gavin Spickett2,
    4. Julia L Newton1,2,3*
    Full paper: http://onlinelibrary.wiley.com/doi/10.1111/joim.12022/pdf I don't think it's free access unfortunately, although Wiley is undergoing maintenance so that might have something to do with it I suppose...
     
    Sasha and ukxmrv like this.
  2. Simon

    Simon

    Messages:
    1,531
    Likes:
    4,907
    Monmouth, UK
    Thanks for posting this. I'll try to get hold of the full text but meanwhile here are a couple of quick comments:

    • I'm surprised that the POTS subgroup is only 13% of the total; from other work published by Julia Newton's group I'd assumed POTS was more common in CFS. However, it's not clear if the original cohort of 179 patients is representative of CFS patients generally.
    • It says that the Orthostatic Grading Scale (OGS) is an effective tool in identifying POTS from non-POTS patients, but I wondered if the OGS, or something that correlates very strongly with it, was used to define POTS (Postural Orthostatic Tachycardia syndrome) in the first place. If that's the case it would be almost a circular definition, but maybe the relationship between orthostatic issues and POTS isn't as strong as I assume.
     
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,386
    Likes:
    5,900
    I was never clear from her earlier work whether the larger percentages referred to patients who met the criteria for POTS, or included patients who had identifiable abnormalities, but not to the extent of justifying a diagnosis of POTS. This isn't something I know much about, but thought I'd share my perhaps confused thought.
     
  4. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,710
    Likes:
    10,208
    Amersfoort, Netherlands
    I think the 13% mark for POTS sounds similar to what was in the US study of CFS adolescents a while ago. Most patients had NMH, and a smaller group had POTS. A few had both.

    But I think POTS tends to get talked about more, in proportion to its prevalence, probably because it's better known and defined, and much easier/faster/simpler to diagnose. I even see threads pop up on this forum where someone describes their OI symptoms in a way that sounds like NMH, but they call it POTS :p
     
    ahimsa and Simon like this.
  5. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,247
    Sth Australia
    I suspect that POTS gets more talked about as its probably more diagnosed as its easier to diagnose eg only a 10 min standing test where one may need a lot longer test for NMH.

    The 13% rate really surprised me as I would of thought it would of been more. I strongly assume thou if the ME consensus definition was used instead of a CFS one, that the rate would of been far higher then that.

    The findings do fit me thou.. younger age when I first got ME (so may of got the POTS first when I was in my 20s). I suffer less tiredness then most CFS people.. the POTS itself is one of my worst symptoms.

    Hopefully this study will cause some to just study this subgroup apart (like all the subgroups should be being studied apart) as there are some distinct differences eg If I severely crash due to the POTS symptom, Im often recovered in a couple of hours... and the POTS stops me from getting as much post exertional symptoms (sometimes stops ME post exertional hits completely) as it prevents me from being able to exercise.
     
    ukxmrv and ahimsa like this.
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    This was posted earlier on Facebook and I hadn't seen it before:

    Well. I did not know about the 'mental clouding' being considered a symptom of POTS. Interesting, especially the increased impairment to concentration due to prolonged sitting. Hmmm....
     
    ahimsa likes this.
  7. ahimsa

    ahimsa Senior Member

    Messages:
    1,081
    Likes:
    989
    Oregon, USA
    Actually, I've seen this symptom mentioned for quite a while. I'm sure I remember Dr. Rowe (one of the Johns Hopkins doctors who first researched the link between ME/CFS and Orthostatic Intolerance) mentioning it back in the late 1990s. And I often joke that my IQ goes up by 30-40 points when I lie down. :)

    But you are right that many folks don't know that brain fog can be a symptom of OI. Disturbed sleep is another symptom that is associated with OI that seems be overlooked.

    Doctors doing research on OI do mention both of these symptoms. For example, here's an extract from http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

    The folks who wrote this page (Author: Julian M Stewart, MD, PhD; Chief Editor: Steven R Neish, MD, SM) use the term Chronic Orthostatic Intolerance. The different naming conventions for different types of OI always reminds me of this quote from the Research1st web page:
    See http://www.research1st.com/2011/06/19/the-outs-and-ins-of-oi/ for the full article.
     
    Firestormm likes this.
  8. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,247
    Sth Australia
    POTS has a ton of different symptoms.. so POTs patients can be easily confused with ME patients and often ME patients who have both ME and POTS often arent aware that a large group of their symptoms may in fact be being caused or made worst by POTS. There are certain things thou which can help a person to try to work out the likihood that they also do have POTS.

    A large POTS symptom list is at http://www.dinet.org/symptoms.htm
    ....

    Ive been thinking more about this study and what seems to be a low rate of POTS to me and have started wondering how good their POTS testing was. I know some places dont do testing as well as others. eg I once went to an autonomic specialist who did a poors mans test on me.. what she didnt tell me was that water should be restricted leading up to the test. I drank 3 litres of water to make sure I got there okay (drink that in about 2 hrs) and did the test and had my POTS then not show up, due to all the water. I shouldnt have been tested with all that water in me but I just hadnt been told and obviously she wasnt aware of how to do good POTS testing.
     
    Firestormm likes this.
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,710
    Likes:
    10,208
    Amersfoort, Netherlands
    Newton is regarded as something of a world-wide expert in POTS, especially in relation to ME. I think the research thus far just shows that NMH is far more common than POTS in ME, though a significant percentage do have POTS.
     
    taniaaust1 and Firestormm like this.
  10. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    NMH, Val? Thanks.
     
  11. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,710
    Likes:
    10,208
    Amersfoort, Netherlands
    Neurally Mediated Hypotension. Instead of heart rate climbing abruptly to a high level when standing up (as happens in POTS), blood pressure drops after standing or sitting up for a while. It can be delayed by (I think) up to 45 minutes.

    The basic research paper about it is at http://jama.jamanetwork.com/article.aspx?articleid=389684
    You can find more stuff by searching for "neurally mediated hypotension" "chronic fatigue syndrome" at scholar.google.com
     
    Firestormm, taniaaust1 and ahimsa like this.
  12. Simon

    Simon

    Messages:
    1,531
    Likes:
    4,907
    Monmouth, UK
    Seems like a reasonable sample:
    It's a bigger and probably better sample than an earlier study from the same group that founda 29% POTS rate in a sample of patients:
    So 13% is probably the best available estimate of POTS currently available. Though as vj says, NMH rates are probably higher.
     
    Firestormm likes this.
  13. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Wide pathologies - hopefully this may add to the understanding of ME in part but let's have the cause.
     
  14. ahimsa

    ahimsa Senior Member

    Messages:
    1,081
    Likes:
    989
    Oregon, USA
    Firestormm and anyone else interested in more recent data - Dr. Rowe, one of the authors of the 1995 paper that's listed by Valentijn above, did a webinar on this topic in 2010. Here are some links that might be helpful:

    (video)
    http://www.cfids.org/webinar/slides-090110.pdf (slides to go with video)
    www.cfids.org/webinar/cfsinfo2010.pdf (general info)

    PS. I was trying to just post the link to the video, not insert an embedded version (which takes up more space), but can't figure out how to do that. I guess it's okay the way it is.
     
    Firestormm likes this.
  15. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    Thanks guys. I dare say there is a lot of confusion and difficulty in determining what might or might not be POTS. In my own case a labyrinthine infection that caused some continuing damage was more responsible for the 'vertigo' and 'nausea' than I think POTS might be. For me betahistine dyhyrochloride was sufficient to take that damned nausea away. And the dizziness is only now an occasional pain. I think GPs and service providers do need to be more aware of POTS and hopefully, the measure will be hammered home. I'll make a note to ensure my own service providers are fully up to speed with Julia's latest findings and with her advice. Thanks :)
     
    ukxmrv likes this.
  16. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,247
    Sth Australia
    So are u saying that the first study recruited patients from a CFS patient support org and the second study recruited from a CFS clinic?

    If the patients for that first study were all members of a patient support org, I'd think many of them to be in a patient support group org probably many more would of been long termers of this illness or generally may be more severe (more likely to be ME cases too rather then CFS) then those often being seen possibly regularly in general CFS clinic (those who have CFS less minor rarely I'd think bother to join patient support groups). So possibly they would still find higher amounts of POTS then this study if they had recruited study participants from a patient support org. (I do think it would give different results a change from where recruitment is coming from).

    I have a theory going on at the moment (which Im looking to prove either right or wrong).. Im thinking that the longer one has this illness, maybe the more likely one is to get POTS??
     
    ukxmrv likes this.
  17. Simon

    Simon

    Messages:
    1,531
    Likes:
    4,907
    Monmouth, UK
    Patients in both studies had been seen and diagnosed by the sameclinical teamaccording to the same criteria, but the recruitment method was different (i.e. all members of the ME group had previously been through the clinic).

    I just checked: both groups scored the same on the Fatigue Impact Scale:

    New study: FIS = 98 vs previous study = 96(0-160 scale, mean score of 13 for healthy controls in first study).

    Those in the new study had been ill for an average of 87 months (not given in first study). So on the available evidenceit doesn't look like these are very different types of patients.

    Hope this helps.
     
    ukxmrv and taniaaust1 like this.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    You guys may well have watched/listened to this already. It's a presentation from Julia given at the AFME AGM. Not sure when it was - loaded a few weeks ago anyway.

    It is very very very interesting and talks not only about POTS but about her research projects and others too. Can honestly say that it's one I will be keeping, and listening to again - and I don't think I've ever said that before!



    Even talks about the desire for sugar and how this might relate to low blood pressure! Buggar me been doing that for eons and put it down to sweet tooth :D

    All part and parcel of what she's talking about - maybe - will await the science with baited breath.
     
    Simon likes this.
  19. taniaaust1

    taniaaust1

    Messages:
    8,297
    Likes:
    5,247
    Sth Australia
    Thanks for doing that brain work and getting that info together so we could see it to see how they compare.
     
    Simon likes this.
  20. Simon

    Simon

    Messages:
    1,531
    Likes:
    4,907
    Monmouth, UK
    As I'm too lazy to watch all of this, could you tell me where to find this bit? When I have relapses - which happen in an instant - I go pale, have to lie down, and have a huge craving for sugar. Think it may be due to NMH and maybe the sugar craving is a clue.
     
    Firestormm likes this.

See more popular forum discussions.

Share This Page