Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Dr Chris O'Callaghan

Discussion in 'ME/CFS Doctors' started by Hutan, Jul 26, 2015.

  1. Hutan

    Hutan Senior Member

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    @EtherSpin My son and I saw Dr Callaghan last week. (Incidentally, at the time I had viral conjunctivitis, the outcome of having overdone things a bit last week).

    Have you seen his draft booklet? That and his comments to my son and I do seem to indicate that he sees ME/CFS as pretty much chronic fatigue caused by orthostatic issues and corrected with BP drugs and exercise. He was very firm in his view that my son and I will be essentially well in a year, despite us being now 2.5 years in to this illness and statistics from numerous studies not supporting his confidence.

    Here's an email I sent to him, the second of two, this one mainly about GET, which he wanted to prescribe for us. Dr O'Callaghan seems to be a nice man but I don't think he has read much about ME/CFS. When I mentioned the rituximab trials and the research that was finding antibodies related to POTS he dismissed them as things that will probably come and go as so much has before it, although my impression was that he was not previously aware of either.

    Perhaps together we ME/CFS patients of his can help to inform him more, especially about GET which can do harm.

    Dear Dr Callaghan,

    I have now read your booklet ‘It’s not in your head’. The linking of anxiety to adrenalin to orthostatic intolerance is terrific and seems so obvious that it is a wonder all doctors do not understand that. I guess such are many good insights – obvious in retrospect. Research and dissemination of this insight and the link to stretchy tissues too will hopefully in time bring comfort and effective treatment to many more patients.

    As I said, I saw your presentation at the ME/CFS conference and have since passed your insights on to other ME/CFS patients together with positive comments about you as a potentially useful,lateral thinking doctor for patients with ME/CFS.

    However, in the manner of many who have a shiny new hammer, you weaken your argument by suggesting too many things are only nails. By venturing onto ME/CFS ground with a rigid prescription of exercise, you reveal a lack of knowledge in this particular area. My good opinion of you was the reason why I was a bit gobsmacked in your office when you offered a prescription for rigid GET – an approach that has been discredited as an effective treatment of ME/CFS.

    I really appreciate that you responded to my letter. However I think, in your haste to reply you have missed or misunderstood most of the points I was making. I have no problem with Florinef. A prescription for that was one of the reasons we came to see you and we will of course be trying it. I do hope that you will have time to reread my letter and look at some of the references that are linked in it. I think you are a well-intentioned doctor who seeks truth and so I believe that offering some more information is not a waste of time.

    There are many points I would like to cover here but I will restrict it to just a few.

    1.ME/CFS
    ME/CFS is different from just fatigue. It isn’t caused by deconditioning. It isn’t maintained by deconditioning (although may be exacerbated by it). ME/CFS is not fully explained by orthostatic intolerance. There is no evidence that ME/CFS goes away in older patients as their blood pressure increases or is cured by exercise and/or orthostatic intolerance drugs. Yes, stretchy tissues may be a predisposing and exacerbating factor but, as far as I know, not all patients with ME/CFS have stretchy tissues or orthostatic intolerance.

    When your booklet speaks of ME/CFS, it is weak. Trying to cover drug treatments for ‘Fatigue’ (a poorly defined symptom of a wide range of medical conditions and behaviours) in only three sentences, helps no one.

    2. 'Housework does not count as exercise'
    A minor point but there speaks a man who probably hasn’t done much housework. How can you be suggesting 5 minutes of walking is exercise of therapeutic significance and yet ignore the exertion of, for example, vaccuuming the carpets, raking leaves or washing the car? Have a go at stripping a double bed and remaking it in a timely fashion. There are studies that have examined calories burned by various types of housework – have a look. Chat to your wife.

    3.Rigidly applied GET is dangerous
    Even exercise fanatics like Michelle Bridges acknowledge that, if you have a full-on cold or flu, you don’t train. You give your body a chance to fight the pathogens. The biochemically induced ‘sickness response’ that causes people with infections to seek quietness and reduce activity is an example of evolution endorsing this.

    Most proponents of exercise programmes for ME/CFS patients now recognise that flexibility is important. If a patient has PEM or a secondary infection or has had to exert themselves doing some other extra activity that day, then there is no value in sticking to a pre-defined amount of additional exercise. There is potential harm, perhaps lasting harm, just as a person with the flu who pushes through a training session may do themselves harm.

    Your statements that ‘Exercise must be regimented’ and that ‘over-exercise is avoided by doing an identical regimen every day’ are dangerous for healthy people, let alone people with ME/CFS, and lack nuance. If you do only one thing as a result of my letters, please do this. Read the article on exercise for ME/CFS patients by Lucinda Bateman, a very well respected expert in this specialist field. http://iacfsme.org/ME-CFS-Primer-Ed...he-Exercise-Conundrum-Lucinda-Bateman,-M.aspx

    Exercise in this context is a treatment, with benefits and risks. If you are going to prescribe it for ME/CFS patients and write about it, you need to know more. A recent article by Tom Kindlon (http://www.ahmf.org/Fall2011-Kindlon-Harms-paper-59-111.pdf) on reporting of harms from exercise interventions for ME/CFS patients would be worth reading. Unless data on any harm of exercise therapy for accurately diagnosed ME/CFS patients is systematically recorded, it is not possible to make reliable statements about its safety for this patient group. As you say, your feelings about whether your ME/CFS patients have been helped or harmed by a particular kind of GET are undoubtedly biased. Most patients who find no help in what a doctor offers just move quietly on and ME/CFS patients who must carefully allocate their energy (and funds) probably do this more than most. The finding that 'high rates of adverse reactions to exercise have been recorded in a number of patient surveys. Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health’ is also biased but deserves consideration alongside your own experience.

    Interpreting the data that does exist is indeed complex.

    For example ‘ it has been shown that satisfying the Fukuda CFS criteria <that is, conforming to a more restrictive definition of CFS> was the most powerful predictor of poor response to either GET or CBT in those with fatigue’.

    Yes, experienced ME/CFS clinicians hold different views on exercise. 'Lerner “prohibits” exercise (131,132) until CFS patients score 7 on his Energy Index Point Score [meaning a person who does not need to nap during the day, is up from 7AM to 9PM, can work a sedentary 40-hr/ week job, and do light house-keeping] saying “if you exercise before that you're going to go backwards" (133).’ Perhaps that is extreme but that is his particular clinical observation, based no doubt on having seen many thousands of patients.

    Bateman’s point that, until the pathology of ME/CFS is better understood, it is wise to apply caution in exercise therapies is well made. First do no harm.

    Best regards,​
     
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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Has the Florinef helped either of you?
     
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  3. Hutan

    Hutan Senior Member

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    @Never Give Up It's only the second day so too early to tell. We are on 200 mcg/day. I saw that your son improved with it. Did it last?
     
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  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, but the effects waned and he needed to double his dose to .1mg twice/day to feel better again.

    It's just become hot here in coastal southern California, and despite using the air conditioning around the clock, he is having an increase in POTS symptoms, nothing like before, but, decidedly there. We're waiting it out for now.

    I hope Florinef helps you two.

    I'll be curious to know how Dr. Callaghan responds.
     
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  5. allyann

    allyann Senior Member

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    I ended up in a psych ward with a severe suicial psychotic episode whilst on Florinef. It is listed as a side effect so get your loved ones to keep an eye on you. I saw Dr O'Callaghan. He had lots of good points but yes he falls into the GET camp along with Dr Oldmeadow. Unfortunately most Physicians in Melb have the same approach. I haven't tried CFS recovery as I have heard that they are really expensive and I haven't seen enough good reviews from them.

    As an aside Dr O'Callaghan has learnt a lot more about the condition since becoming involved with Emerge. Four years ago he was telling us it was all the same condition.
     
  6. Hutan

    Hutan Senior Member

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    Thanks @Never Give Up. I had been wondering how your son is doing and hoping he was doing well.

    In response to my email above, Dr Callaghan replied 'Thanks <Hutan>'. That was all.

    To be fair, he had replied very quickly with a longish response to my first email, although mostly he reiterated his belief that we would be well in a year and to try the approaches he was suggesting.

    I hope he does look at some of the links.
     
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  7. Hutan

    Hutan Senior Member

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    Thanks @allyann for your warning about florinef. From reading on this forum, I need to look in to potassium supplementation too - neither Dr O'Callaghan nor the pharmacist mentioned that.

    Yes, I'm still hesitating about seeing them. I heard on this forum that they will prescribe low dose naltrexone. I thought for that alone it might be worth trying them.

    I hope you are right. I haven't yet seen any evidence that he sees any meaningful difference between ME/CFS and orthostatic intolerance (and I've read his 180 page booklet).
     
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  8. AndyPandy

    AndyPandy Making the most of it

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  9. allyann

    allyann Senior Member

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    I have learned to take the things that work from doctors and disguard the things that don't. Did he talk to you about horizontal exercise? I found that this works for me and I have built up some core strength this way. He also was adamant that you need to get the POTS symptoms under control before you start exercising with me. I also liked his dietary advice of Coffee, Chocolate and Salt to raise my BP!
     
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  10. Hutan

    Hutan Senior Member

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    I admire your sanguine approach @allyann and certainly you are right; we have to take the good things we can find from doctors.

    I'm puzzled about
    Dr O'C actually wanted us to do the GET first and had his prescription pad out. When I expressed my belief that GET didn't work, he asked 'Well, what do you want from me?'. I said maybe some medication would help. So he prescribed us Florinef, saying that after a month or two perhaps we would be feeling much better and could reconsider the GET then.

    The thing is, doctors can cause considerable harm by peddling false beliefs and, when we have the energy, I think we should try to challenge them.

    For example, one of the many case studies in Dr O'C's booklet is of a young 'exceptional footballer'. The young man's illness started when he got gastroenteritis while in Mexico. But, we are told, it might just have been that the man was drinking too many beers in the sun. So already, the young man's experience is being reduced to a result of poor behaviour. 6 months of work was missed. He tried GET, was briefly back at work but 'another innocuous disaster set him back to where he came from'.

    'The biggest obstacle facing <the young man> was uncertainty about the merits of exercise'. 'Although he had given exercise a really good try, he had only ever managed 30 minutes of walking daily'. 'He is a work in progress, but the plan is to give him drugs to elevate blood pressure, recommence the exercise program, and make him read this book ten times if he doesn't do what he is told'.

    Imagine how this young man feels. Previously exceptional at football and now unable to walk for more than 30 minutes. And made to feel that he has just not been trying hard enough.
     
  11. allyann

    allyann Senior Member

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    I agree with you Hutan, making anyone feel they are not doing enough when they have this hideous illness is not on. I haven't read this book so I can't comment but can only give you my experience.

    I fainted in his office as he was running nearly two hours late and I was sitting for way too long. Maybe as he saw rather than heard my symptoms, but either way a doctor that doesn't listen to how a patient is feeling is not a good doctor. I haven't been back because Florinef doesn't work for me and without being able to be upright for long enough there is no point with GET.
     
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  12. EtherSpin

    EtherSpin Senior Member

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    DAMN! sorry Hutan, I don't know how I missed this!
    I really hope Chris took what you said on board. the brain is there and sometimes he seems like a very caring person. I was a bit thrown by a diagnosis of sorts (don't want to disclose details) that he gave ,modified,retracted , confirmed and then finally told me (when I asked for it on paper for my doctors benefit) a genetics clinic would be best, the clinic sorted it in 25 minutes after meeting me.

    I can't read books and on this forum have to type quickly and without interruption or my prose will not flow, i did have a go at reading his book but needed help from my wife and my dad to confirm conclusions in it , remind me of parts and just discuss it with me.
    There is lots that makes sense but I *know* that the conclusions are jumping far beyond their actual scope - obviously the deconditioning as causitive like i mentioned in previous post, Im with you on the housework as well! I dont do housework beyond watering garden and the odd pressure cooker meal where I can sit down between steps but I am awake at all hours and I do struggle to do things with my young kids, piggyback rides, blocks, crawling on the floor, playing in the yard and I tried to explain to Chris that it was near impossible to measure my exercise capacity with the kids this age. also, I have nerve damage from EBV as a kid that makes heat on my skin/body temperature increases generate pain so it was very hard to measure the benefits of one of the drugs he uses, it causes chills ,goosebumps (like all over my body including my scalp) and sweats and between that and my allodynia (the heat pain) I couldn't get myself into an appropriate outfit to be outside an exert, it made me extra housebound and I said that it was simply impossible to know how much it helped me out because the temperature issues were a stressor and thus a drain, he said that no vasoconstrictors would likely work for me, that I could drop the drug immediately and instead quadruple my fludrocortisone dose overnight - if it didnt help I was to never see him again. so massive reaction to the dose, indescribably spaced out but in weird discomfort.
    Nowhere on the web can i see an increase like that recommended to happen overnight (not even spaced out over a week!).

    People rave about Chris so no doubt there is a type who will have their lives absolutely turned around, Im guessing its people who dont have extreme cognitive problems or think a virus launched their CFS.
     
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  13. allyann

    allyann Senior Member

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    @EtherSpin, please beware that you can have a psychotic episode from Florinef. I ended up in a psych ward for five weeks because of it. If the spaced out feeling gets worse or you start hearing voices. Please see your doctor immediately.
     
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  14. EtherSpin

    EtherSpin Senior Member

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    Thanks Allyann, I tried the quadruple dose just for the one day (immediate jump from one tablet to four as instructed) and it was enough to make me not want to go back and to return to my 1 tablet dose which I think actually helps a little in the summer.
     
  15. Jeckylberry

    Jeckylberry Senior Member

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    Interested to hear if there was any response from your letter, @Hutan .
     
  16. Hutan

    Hutan Senior Member

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    @Jeckylberry, Edited - sorry, had forgotten. Just read my post above - Dr Chris O'Callaghan did reply by email with just 'Thanks <Hutan>'.
     
    Last edited: Aug 9, 2016
  17. Jeckylberry

    Jeckylberry Senior Member

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    Sounds like he's got it all sewn up. Doesn't need your input. It messes with the outcomes. Exercise has to work. I'm disappointed with reports about this guy. Everyone reckons he's great, at first at least.
     
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  18. EtherSpin

    EtherSpin Senior Member

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    I haven't heard a word about him in the groups for some time now and certainly haven't heard him in reference to any treatments other than BP stuff or him acknowledging any other mechanisms for the origin of CFS. I have a few friends who were seeing him and there is one who was still seeing him but I haven't spoken in 6 months - most wound up clashing when they insisted they weren't deconditioned as the beginning phase of *getting* CFS or had big claims on first meeting about a particular genetic diagnosis only to have it retracted when they asked for it on paper and then having success in getting diagnosis by leaving him and seeing a genetics clinic.

    I was told off for doing part of my exercise program, he hadn't given qualifiers and I took an opportunity for my kids to see something entertaining that involved me walking in the warm sun - its one of these situations where the recommendations seem close to flippant and if you can't comply then the implication will be that you aren't trying hard enough but if you do comply and get sick its because you overdid it even if you kept it as close to the prescribed exercise limit as life circumstances will allow.

    I have 3 kids and have tried to explain that much of my energy is already used simply by trying to do hygiene routines, cook the odd meal, help the kids with X or assist my wife with looking after the younger ones even in a very passive manner.
     
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