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!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Professor Mathias + M.E.

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by TaintedLuv, Feb 26, 2011.

  1. TaintedLuv

    TaintedLuv

    Messages:
    30
    Likes:
    0
    Hey :)

    I was wondering if anyone had any exeperience of Professor Mathias in the UK? I am pretty sure I have POTS but because I've been diagnosed with ME since I was 11 (I'm now 22), I had heard Professor Mathias isn't so understanding on the ME part and so wasn't sure whether I should see him or not... as the people I've heard who have seen him weren't actually diagnosed with ME first, and I'm also bed/house bound so wonder if he would put my low bp and fast heart rate down to that...

    Thanks in advance for any info/help!

    Bec
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,436
    Likes:
    1,928
    London
    Hi Bec, yes, I've heard mixed things about Dr Mathias. Live in London and know people who have seen him. As you said he's not knowledgeable about ME and he's was very sceptical about treating POTs in patients I know. One woman was pretty swollen up and he was not very nice about her weight and lack of exercise capability.
  3. TaintedLuv

    TaintedLuv

    Messages:
    30
    Likes:
    0
    Thank you for replying! Urgh - I can't really go to see him without mentioning my ME because I'm in a wheelchair and so he'll want to know (obviously!)... hmm.. and I guess the excuse he could use is that my body is deconditioned and that could be the reason for my low(ish) BP and more so high heart rate when standing (..well, and all my other symptoms too I guess)? I'm not sure what to do. I luckily have some money aside for a private consultation but I'm really in two minds as to what I should do. It really shouldn't make any difference having the diagnosis of ME/CFS should it? Argh :(
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,254
    Likes:
    5,432
    I'd try to see him on the NHS. Save the cash!
  5. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    My mom is being evaluated by him just now. I think he is looking at POTS & OI.
    I attended her intake apptment. He wasted a lot of time asking irrelevant personal questions. (When did you get divorced ?? WTF.) I found him unctuous and strange.
    However, the tests he ordered were pretty thorough.
    My mom is seeing him privately. The wait to see him on the NHS is long. The wait for the testing is even longer.. 9 months if memory serves.
    I am hoping he will put her on desmopressin (sp?), but I am a little concerned about what I'm hearing on here.
    Why does he evaluate for POTS, if he doesn't offer a txt?
    A private apptment runs about 325 quid for a first apptment..or maybe 350...so he's not cheap.
  6. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    So- 350 quid for intrusive questions and a possible psychogenic diagnosis- from someone with his c.v. as well?

    That's not good.
  7. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
  8. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    Angela, it never occurred to me that was where he was going. I thought POTS & OI were widely accepted mainstream medical conditions?

    You can't fake the results to a tilt table test, can you?

    I just thought he was a wierdo & I resented him wasting our 1 pound a minute consultation on irrelevant stuff.

    I'm confused.
  9. sleepy237

    sleepy237 Senior Member

    Messages:
    246
    Likes:
    12
    Hell
    The professor contact details are available online if you google his name itself. I believe you can seen him via GP referral or privately.
  10. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    I honestly can't say for sure aquariusgirl (hence my 'possible' qualifier).

    But neurologists are notorious for resorting to psychogenic explanations. Findley does it. Sharpe's colleague Jon Stone is always at (him and Sharpe promote the term 'hysteria') as just two examples. White, Wessely et al basicallly call ANY sign and symptom a result of deconditioning and false illness beliefs.

    I believe even POTS and OI have been dismissed as resulting from 'deconditioning' and psycho-social 'stress' (I haven't got references to that on hand).

    The questioning on marriage break-ups and being unsympathetic because of someone's weight and inability to exercise? That sounds like psychogenic reasoning to me, I'm sad to say : (

    Psychogenic explanations are mostly due to the fallacy that, "if we are uncertain about your illness's cause, it must be metaphysical by default: beliefs, lies, delusions, even the power of the mind over the body". It also reflects a lack of medical knowledge both in the field and at individual doctor level.
  11. keenly

    keenly Senior Member

    Messages:
    109
    Likes:
    7
    I saw him on the 14 DEC

    He is the nicest doc i HAVE EVER MET!
    I hear his team are very nice as well.

    I am awaiting to have tests as of right now.
  12. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    interesting. are u being evaluated for pots or oi?
    are you seeing him privately or on the NHS?
  13. keenly

    keenly Senior Member

    Messages:
    109
    Likes:
    7
    for everything including sudomotor function!

    I saw him on the NHS after being referred by PROFESSOR AZIZ at barts.

    Had to wait 14 weeks and now its been 4 months and still no news on testing.
  14. Machair

    Machair

    Messages:
    64
    Likes:
    7
    Chelmsford, England
    I am really interested in this thread so wonder how you will get on Keenly. I have considered seeing him myself but wonder how he views ME/CFS. Perhaps you could let us all know?
  15. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Messages:
    67
    Likes:
    17
    UK
    I know that this is an old thread, but I am hoping to see Professor Mathias privately because of POTS. It looks like I may have Ehler's Danlos Syndrome from birth as I fit much of the criteria. I developed ME in 1984 after EBV and since 2007 all of my symptoms have worsened including neuropathy. I looked into the link with all of these conditions and now realise I have them all. Apparently lots of people with ME have POTS and EDS.

    Professor Mathias has been excellent in diagnosing POTS and EDS and even if he isn't tuned into ME, I am determined to get properly diagnosed so that I can start treatments. Everything I have symptom-wise is put down to ME and anxiety and nothing else has been looked at or treated even though so many tests and scans come back abnormal.

    How do I know I have EDS? Well I have scoliosis of my spine, a hump forming on upper spine, dislocations, overflexing joints, papules on feet and wrists, joint pain, partially collapsed lung, POTS and gastric issues.
    justy likes this.

See more popular forum discussions.

Share This Page