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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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julia newton newcastle

Discussion in 'ME/CFS Doctors' started by LHG, Jul 19, 2014.

  1. LHG

    LHG

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    I know the question has been asked before but I am new to the group. Can anyone please help me qualify the care received in Newcastle by this prof and her staff? Does good research = good clinical care? My husband and I live in Scotland but are American. (My husband is a Glaswegian with a US passport).
    He became extremely ill in January and has been diagnosed with ME. We are desperate for good comprehensive medical care. If you have experience with the Newcastle clinic would love to hear your impressions. We are basically stuck as he is too ill to travel back to the US, so are looking for the best care possible here in the UK. Anything you can tell me will be much appreciated. If you want to send me a private note, please do. Thank you.
     
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  2. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Hi Lora,
    I'm currently waiting to see her so i can let you know when i find out? The waiting list is long i've heard. I've been waiting a couple of months so far but i got the impression it could be a few more. I'm currently wondering the same thing as you but i live nearby so its not as bad for me if its a let down.
     
    justy likes this.
  3. SOC

    SOC Senior Member

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    Can the doctor who diagnosed him with ME do anything for him? There are very few, if any, doctors in the UK using the most successful treatments. The ME political/medical situation is very poor there. Your husband would probably be better in the long run if you can get him back to the US near one of the top ME/CFS doctors.

    I know travel can be extremely difficult for people with ME, but many of us have learned tricks to make travel manageable so that we can see top specialists who treat ME as a medical, not psychiatric, condition. If you let us know which symptoms in particular are making it impossible for him to travel, some members might be able to share tricks to help.
     
  4. LHG

    LHG

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    The doc is just our GP which means he is pretty much impotent. When he looks to see what he's "allowed" to do (remember he's working for the government, not the patient) he sees a big blank. He can help with sleep and pain (and has) and that is pretty much it. Everything else must be done by a specialist and he has referred us to 2 but when we've gone to the appointment (and you won't believe this) realized we would not really get to see the specialist but one of his underlings (a kid basically). They don't have a clue and have told us as much.

    My husband crashes anytime he goes to the doctor. It might be the motion of the car, the high pitched engine sound when we travel at high speed on the highway, or the temperature. Last week he was able to walk into the doc's office but when it was time to leave, had to get wheeled out. We're beginning to think temperature is a trigger (he turned on his heated seat in the car yesterday and crashed about 10 min. later). He turned the seat off, put some air on him and he came out of it within 10 min. or so and felt much better.

    I've been digging around on the web for the last 6 months looking at treatment options, doctors, etc.. and decided it's going to take me screaming bloody murder to get anything done around here. Our GP has just written a letter to a specialist (who's underlings we've seen instead of him) asking that he agree to see my husband in the flesh. I've decided to take each symptom and concentrate on getting them taken care of one at a time (I'm overwhelmed as you can imagine). And I've been educating our GP as we go along, taking him reports from latest research, and even had a book delivered to his office from Amazon. Any US doc would have already thrown me out of their office but he's taking it quite well. He too is desperate for a second opinion as well as help with a treatment plan. For example, my husband seems to have OI type symptoms but the GP isn't sure how to treat these symptoms taking into consideration all the other symptoms.

    So in your opinion, who are the top 3 docs in the US for this condition? With my husband's "temperature issues" we're thankful we're in a temperate climate where it doesn't get much above 70. If we were in Texas right now or any of the other locations we've lived, he'd not be able to leave the house. But I'm planning for the future and feel that ultimately, we'll need to move back for the best care.
     
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  5. LHG

    LHG

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    I look forward to hearing what you think!
     
  6. Esther12

    Esther12 Senior Member

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    The clinic Julia Newton is working with is likely to be better than most imo.
     
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  7. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Especially if your husband has OI problems. Julia recommended i do to tilt table while waiting which is based at the same hospital as her. But i wouldn't recommend this as the staff have zero knowledge of ME and the treatment i got was a disgrace. Patronising, condascending and a 2.5 hour interrogation while i'm shaking and crying on a bed from collapse.

    I wish i'd just waited to see her directly now. I'll let you know how it goes.
     
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  8. Mark

    Mark Acting CEO

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    A friend of mine visited her about a year ago. Due to the very long distance she wasn't able to go more than once, but the further tests Julia Newton recommended have had a major impact in persuading her GP to take her seriously and got her on the right track. She's had some major breakthroughs as a result and got a lot of objective findings on tests; she's now seen some very good specialists and she's well on the way to getting a proper diagnosis (I can't say what for confidentiality reasons, and it's not yet definitively confirmed afaik). This after a decade of serious neglect and a lot of insults - she's very ill indeed. I think Julia Newton's clinic is pretty much the best bet that I know of in the UK.
     
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  9. Sasha

    Sasha Fine, thank you

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    @Mark, are you able to say whether your friend thought she had ME when she went to the clinic and that the tests are showing that she has a different condition?

    That's one advantage I can see in going to Newcastle - Dr Spickett there (also in the ME/CFS unit) has the reputation of being able to rediagnose people with accuracy (but from the sounds of it, so does Prof Newton).
     
  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I'm not sure how much could be gained from Dr. Spickett as he will see people who aren't from his catchment area but no treatment could be provided.
    I live only 2 miles in the wrong direction and this is what i was told by his secretary unless things have changed.
     
  11. Sasha

    Sasha Fine, thank you

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    The benefit would be if you've been misdiagnosed with ME and he's able to come up with another diagnosis. That would then be for your own PCT to treat.
     
    SOC likes this.
  12. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Might be worth trying again. It used to be quite difficult to see him. I was fobbed off for 3 years because there's a CFS/CBT clinic in my catchment area so i gave up.
     
  13. Mark

    Mark Acting CEO

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    Yes, that's correct.

    I think there are so many possibilities for missed diagnoses that personally I'd say to anyone who feels certain that they have 'pure ME' (as mentioned on another thread) that one can never really be certain there isn't actually something else going on that's been missed. My friend's case would be a classic example. So I think it's always worthwhile continuing to look at other possibilities.

    In my own case, I have recently been diagnosed with moderate/severe sleep apnea. I insisted on seeing a nose doctor and he found polyps in my post-nasal cavity last week. Reading up on that, they can cause sleep apnea and can be caused by allergy to airborn fungus. Fungal infections and sensitivity to dust have been a feature for me throughout my 20-year illness, so I suspect that is the underlying cause of everything for me.

    Yet I have a lot of features that have made me think (and still do make me think) that I fit in with the ME/CFS world - I have had extreme night sweats, particularly at onset; didn't have a cold for about 10 years and then suddenly started catching colds on an almost weekly basis; my heart rate rises 30bpm when I stand up which qualifies me for OI (which was a surprise); and yes, physical or mental exertion has consistently provoked relapses (which I suspect is due to my body not healing while I'm asleep but not really sleeping and therefore not healing). I don't know yet how all of those symptoms fit in with the fungal allergy-induced sleep apnea, maybe I have something else (eg autoimmune) as well, or maybe the fungal sensitivity and apnea can cause all of that stuff. Time will hopefully tell.

    But anyway, I've seen enough missed diagnoses in the last couple of years, in many different people diagnosed with ME/CFS, that I'm inclined to think that's the best starting point for most people with ME/CFS, even those who have had lots of tests and have classic symptoms...and in any case, from what I know, I think Julia Newton's clinic is one of the best bets, if not the best bet, in the UK.
     
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  14. Sasha

    Sasha Fine, thank you

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    Thanks, @Mark, that's very interesting - and pretty amazing that even though you sound very "classic" ME, you've got this clearcut thing that's either in addition or (who knows?) maybe driving a lot of your symptoms. That would be fantastic if you've got at least one aspect that's treatable.
     
  15. maryb

    maryb iherb code TAK122

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    @Mark
    have you ever been tested for Lyme?
    Just interesting to read your post, I was on a Lyme forum recently where people were discussing the link with fungal related sinus/nasal problems and their Lyme diagnosis/treatment etc.
    As someone who's just tested positive for Lyme after 9yrs of being ill with... ME - a lot of my symptoms now make sense.
     
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  16. ukxmrv

    ukxmrv Senior Member

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    You could consider giving your husband a "poor mans tilt table test" at home to see what happens? My own GP did this for me in the 90's and I only had a proper Tilt Table test after paying for it myself. The ME clinic I was under could not do it and the Cardiology Department they referred me to refused.

    Then you could put together a treatment plan or push to be seen at Newcastle if it looks certain. The other advantage of the "poor mans test" is that your GP could possibly take this more seriously if you presented the results to him/her.

    It seems from the above posts sounds as if Newcastle is useful to help weed out of the common misdiagnoses and for people who have POTs. Not to be sneezed at. I'd like some help with my POTS symptoms and a NHS script for medication but can't currently see my GP to even ask for a referral.

    What happens to ME patients who want their ME symptoms treated there instead though? Newcastle are only going to be useful if you fall into one of the other categories from what people have posted so far. My own experience has been that anti-viral drugs and immune modulators have been the best treatment for me and I don't see Newcastle using these (could be wrong of course)

    Another possibility would be to see Dr Enlander when he comes to the UK (usually once or twice a year) or have a Skype consult with him in New York.
    http://www.enlander.com/
     
    Last edited: Jul 21, 2014
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  17. Mark

    Mark Acting CEO

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    Good question Mary, no I don't think I have. Various docs have done batteries of tests, but I don't know if Lyme was ever included. Probably not. I do have consistently high white blood cell count, GP says it's high in both the part that suggests bacterial infection and the part that suggests viral infection. I don't know if that's typical of Lyme? It does suggest a persistent infection I think...I'm now wondering if it's consistent with fungal infection. But we're drifting off topic from the thread, I don't want to take it over...:) I'm on a good path now pursuing the clues from the sleep and nose docs so I'm optimistic of tracking down the cause. I'll clearly have to drive it myself though...I had to fight to get the sleep referral and then the nose referral, and never would have got either without suggesting them myself...
     
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  18. barbc56

    barbc56 Senior Member

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    @Mark

    Welcome to the "hosehead" community. I have pretty severe apnea and had no idea. There's a forum which provides great information and advice. I haven't been there a lot but have been impressed with the quality of information/ advice. I can't remember the site but will come back and post it.

    Unfortunately, I have not noticed much improvement, relative speaking from CPAP but definitely decrease of morning depression and headaches.

    I've also seen only a bit of improvement, again relatively speaking after having the following treatments.

    Low ferritin which made my RLS worse. Had an iron infusion that made me crash, however the infusion did help with the RLS. Now normal levels but see hematologist once a year. RLS since 16.

    Still have unrefreshing sleep as don't go into deep sleep. I have had this all my life.

    Low sodium from medication. When medication was changed, resolved.

    Low vitamin B12. Resolved.

    Low vitamin D and large doses gave me kidney stones so am taking low dose and the level is slowly increasing but same symptoms when it was normal after being diagnosed with this DD.

    IBS, better but not resolved. Developed IBS about three yeats after diagnosed with me/cfs/fm.

    Excessive Daytime sleepiness. Nuvgil helps. Have had EDS since my teens but did not need nuvigil until senen years ago.

    How much this affects my me/cfs/fm, I'm not sure but because of the above I don't think they are a hugh factor but probably some impact and at least many of these issues are better or resolved which has to be beneficial in the long run for my health.

    All this to say you can have comorbid conditions, some like the ones I have addressed above and still have me/cfs/fm. That's NOT to say that any of these conditions, can be misdiagnosed as me/cfs/fm.

    I have high hopes for Julia Newton as she is science based which gives credibility not only to her but also our patient community. :)

    Barb
     
    Last edited: Jul 20, 2014
  19. Mark

    Mark Acting CEO

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    Thanks...I'm clearly going to have to find out more about apnea experiences in the coming months.

    I think you're spot on in observing that symptoms like sleep apnea may be comorbid or they may be misdiagnosed as ME/CFS - both are possible. The same's true of a few other missed diagnoses I think. Which is part of what makes it so hard to untangle everything. But I think the starting point has to be to diagnose and treat what can be treated and see what's left.

    And pretty much everything I've read from "hosehead" :D experiences in ME/CFS has not been encouraging; loads of people with ME/CFS seem to not be seeing much benefit from CPAP.

    In my case I think I'm pretty much ready to give up on the CPAP after a few months of trying to last a full night with the mask on - particularly because in the last few days, now that the nasal spray has got to work on the polyps, I seem to be sleeping OK without it. The way it looks right now is that all that was needed was this spray to sort out the polyps. The CPAP was just a sticking plaster but it didn't address the cause. Nobody appears to be the slightest bit interested in the cause of it all and nobody seems interested in anything outside of their narrow specialism. Just wear a mask in bed for the rest of your life and we can get you out of our surgery, that seems to be the game here.

    What gets me about all this is that I have had to do all the work on this myself. I would have got nowhere if I'd left it up to the docs, and I've had to fight against the docs to get the solution that seems to be working. I requested the sleep study referral myself, none of my GPs ever thought to do this. Then when it was confirmed, they weren't at all interested in exploring the cause of it or attempting to cure it; the sticking plaster of CPAP was all they had in mind. I had to battle to get a referral to a nose doc because I was sure that would be very significant. Then the nose doc seemed uninterested in the polyps but at least gave me the right spray for them - but he told me nothing at all about what the polyps might mean or how they might fit into everything else. It took a google session to find out they are a cause of sleep apnea and can be a consequence of allergy to airborn fungus. And yet after just a week or so of this spray, my rhinitis has cleared, my nose is clear when I wake up (which is all unheard of, it is normally blocked solid and has been for the last decade or more) and I don't appear to need the CPAP at all to sleep well, now that the polyps have been dealt with. Why could we not have done all that 6 months ago? Or indeed 20 years ago? That might have saved me 20 years of grief, and would have certainly saved the NHS an awful lot of money.

    Absolutely, me too. She seems to be going through things systematically and building up the evidence bit by bit in a way that should make a big difference in the long run.

    What she's done so far in relation to sleep problems and POTS appears on the face of it to be slightly misleading because she appears to be saying these people with sleep disturbance or POTS don't actually have ME/CFS. That's true for many many people I'm sure - they just have the ME/CFS diagnosis because their docs failed to diagnose those conditions and basically gave up on those patients - but as you rightly noted, these can be and often are comorbidities or perhaps symptoms resulting from ME/CFS. I think that nuance has made a few people a little cautious in embracing what she's said about sleep and POTS.

    But strategically, the thing to do with these symptoms is get them acknowledged in the mainstream as very common issues in ME/CFS patients, get them treated in the normal way, and then if they turn out to be atypical and don't resolve under the usual treatment then we can take it from there...and we can get those who are 'cured' once these things are addressed out of the 'wastebasket'...then what is left in the basket will be easier to study.

    There's enormous value in having this clear and high quality evidence that very large proportions of those diagnosed with ME/CFS actually do have diagnosable, testable, treatable conditions like POTS and sleep abnormalities. There are loads of ways this benefits us all...indeed, in my case, her study that found such a high proportion of ME/CFS patients with sleep abnormalities was one of the things that prompted me to press my GP to refer me for testing...so I have a lot to thank her for! :)
     
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  20. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Mark Besides Lyme, I was wondering if you have been tested for the other typical viruses (EBV, HHV-6, CMV, etc) Sleep apnea could be co-morbid with CFS or totally separate cause of your issues so just want to make sure you do not miss something crucial! Have you had an overnight sleep study in a sleep lab? My husband has sleep apnea (but not due to nose polyps like you said) so I am somewhat familiar with it. Best wishes getting the right diagnosis and treatment.
     

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