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Martine McCutcheon opens up about the seven years she suffered from cfs and depression

Discussion in 'General ME/CFS News' started by Firestormm, Sep 22, 2013.

  1. knackers323

    knackers323 Senior Member

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    Could you please explain the differences between me, cfs and pvfs.
  2. alex3619

    alex3619 Senior Member

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    There is no quick and easy way to do this properly ... it would require a book, or a lot of reading of many different sources. I will be cutting out lots of stuff to explain, and others might recall some of this better than I do. I hope some of them will jump in and comment.

    We know from the classic Dubbo studies on developing CFS that from (if I recall correctly) eight to ten percent of patients with EBV fatigue (mono) go on to develop something like CFS. Severity of the response, that is the severity of the symptoms, are the number one predictor of getting CFS. The Dubbo studies were partly (I think) CDC funded but done in Australia. They followed patients after Epstein Barr, Q fever and Ross River fever. Most recover. Some don't, especially if their symptoms are severe. Similar data exists on post-SARS and post-Q fever. Not to mention the possibility that post-Lyme is related.

    So post viral fatigue and CFS are not the same. The worst of PVFS go on to get CFS. The worst of [edit: of those who qualify for] PVFS CFS go on to get CFS ME. [Edit: brain glitch!] I am still not really sure about the Dubbo studies though, but I don't want to go into that here.

    ME is different again. ME used to occur in epidemics, and probably still does. These days though we have post-SARS and post-Q fever, but we used to also get post-polio. The diagnostic criteria for ME are very different from the diagnostic criteria for CFS. However this is complicated by the fact that there are a few different CFS criteria. All CFS criteria require prolonged disabling fatigue, with either a substantive loss of functional capacity or at least a fifty percent loss of functional capacity.

    Some CFS criteria such as Fukuda require a selection of additional symptoms, most of which are optional.

    ME has much stricter criteria, with mandatory symptoms. Many CFS patients do not qualify for a diagnosis of ME. Those that do technically no longer qualify for a diagnosis of CFS, and indeed under the ME International Consensus Criteria a diagnosis of CFS is no longer valid if a diagnosis of ME can be made.

    So CFS is a bigger group than ME, with some overlap. Please note that mild ME that is well managed does not necessarily mean chronic fatigue ... so not all patients with ME will even qualify for CFS. Recovery rates from CFS are low, but recovery from ME is even rarer.

    And PVFS is a bigger group, and nearly all recover in a few years. Since not everyone with CFS got CFS after an infection, then again not everyone with CFS overlaps with a PVFS diagnosis. The incidence of new PVFS is high though, but recovery is high enough to give an impression that most recover. Whereas recovery is not that high with CFS, despite rather unfounded claims to the contrary. Indeed under the Oxford definition all unidentified cases of chronic fatigue are lumped together, and some of these do recover, but from this they infer a CFS recover rate, and then imply an ME recovery rate, that may be higher than the real recovery rate.

    The percentage (prevalence) of the population with PVFS is probably more or less constant. Its suspected the prevalence of CFS is steadily rising, and the prevalence of ME is probably rising at an even faster rate, in both cases due to a low recovery rate, though there is some doubt about whether either has reached a stable percentage where new incidence is balanced by recovery and death. Unfortunately a lack of proper and up-to-date epidemiological studies on this mean we do not know these rates for sure, its largely an educated guess no matter what data you are using.

    I am glossing over this. Its a deep and complex topic. Much of it is discussed in places on Phoenix Rising, and some if it on other sites.
  3. Firestormm

    Firestormm Guest

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    At least BT are trying to raise awareness now. A good step in the right direction if you ask me and it could have been worse:
    justy likes this.
  4. justy

    justy Senior Member

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    She has a message on her afacebook page

    https://www.facebook.com/#!/pages/Martine-McCutcheon/176033142413287

    She mentions anti depressants, diet, pacing, detoxing, lightning process etc etc.
    She doesnt claim to be cured - says she is still ill but much better.
    Also mentions having had Glandular fever at some point.

    I hope that she does get better - just like i hope that we all do. It is a brave move to tell everyone when you are in the public eye. I ahvent even come out to everyone i know. Is hard when my kids friends mums dont know and i have to battle to take the kids to meet them for swimming or something. But its too hard to explain so i keep quiet.
    Most people tend to think you are weird or cant stop telling you they had a friend who recovered with LP or CBT or aloe Vera or Prayer or standing on one leg in a tub of cold water! Cant take all that anymore so just zip it and say am fine. Makes it a bit awkward if they see me in the wheelchair!
  5. cigana

    cigana Senior Member

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    In the UK there are certain newspapers that run stories like this, where people claim to have been cured from ME by simply doing the "lightning process" or changing their diet or whatever, this is part of the establishment/psychologists view that really there is nothing wrong with these people - see how they just need to try a little more (!). It propagates the myth that CFS isn't so bad after all, and really all you need is some antidepresants and a little exercise and you'll be fine
    .
    There is a lot of poor diagnosis here in the UK, most doctors who diagnose CFS have never heard of the Canadian criteria, and plenty of people slip through, like celiacs for example, or people with vitamin deficiencies, food allergies etc. I know people here who have been diagnosed ME but have completely recovered by changing their diet, so basically the initial diagnosis is probably wrong (in their case).

    I just thought that it could be another one of these stories, since recovery from ME is very rare. I read the original post saying "better" as meaning recovered. But now I've read the other stuff on it I see in fact she has only improved not recovered, so yeah that sounds more like ME to me.

    If she is saying I've looked into this myself and it's ME then I certainly believe her.
  6. Firestormm

    Firestormm Guest

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    Hi Justy :)

    I went across the road and had my hair cut this afternoon. I had met 'Anne' previously in the street - as you do - we're pretty much neighbors I suppose but had never had occasion to talk to her before. Not properly.

    I think that's what it takes: some quiet time to properly explain things - which is what I proceeded to do. She'd never heard of ME before of course - MS yes but not ME. She is I suppose in her late sixties but listened and asked questions and I found it rather comforting being able to explain in that environment.

    Of course I was the only one in her 'salon' at the time. It's all very friendly in my new home and I'm slowly getting to know who people are. Anyway, to cut a long story (and hair-cut) short - she was very concerned and complimented me on my ability - now - to manage after the periods of such incapacity.

    And it did help for me to be able to say 'Do you know Martine McCutcheon?' Of course being a hairdresser she has 'OK' magazine etc. about the place. It doesn't really matter if Martine has the exact same thing as me, or had it as bad, or is now managing better than I am: her name was an 'ice-breaker'.

    Fire :cool:
  7. anniekim

    anniekim Senior Member

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    Just sharing in article she said she had to give up lucrative yoghurt commercials as they couldn't insure her. Presume to not being well
    Sami_Lewis likes this.
  8. maryb

    maryb iherb code TAK122

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    The thing I hate is the lumping together of depression and ME.
    I like lots of others have ME but don't have depression - that is another illness so why do they seem to always link them.
    And then the killer line - was prescribed anti-depressants.......... I have been offered this option more times than I can remember, doesn't mean I have depression though.
    Martine certainly has suffered with a serious illness so hopefully she knows enough about ME now to take good care of herself. She's been well enough to make a new drama so I hope very much her improved health continues.
    justy, anniekim and rosie26 like this.
  9. anniekim

    anniekim Senior Member

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    In the article she describes being too ill to lift arms to wash hair, definitely a period of being very unwell. She does say though her doctor prescribed her an antidepressant, cipralex, which she was against initially but helped a lot and she believes her illnesses may partly be due to an unhappy childhood and hectic work schedule/burnout in her early twenties. Hard to say what she had and the heavy focus of depression in the article and assumption it always comes with ME is annoying. brave for her to share her story

    Says not fully well now but much better.

    Anti d's have certainly not helped loads of people with ME....haven't helped with my ME

    I remember she had to pull out of her role in the musical My fair lady due to health problems which at the time sounded like ME type symptoms. She was criticised heavily for this and I just found an article online quoting the famous producer Cameron Macintosh indicating she was unreliable. We've all experienced being accused of being lazy, unreliable when we we were just ill so feel for her.

    She says she has been ill for last seven years and yet my fair lady was 11 years ago so she has obviously been suffering for longer. Who knows for career reasons she may need to emphasise the depression so as to get work again now she has improved. I hope she maintains her improvements

    Just read her Facebook status about it all. She says depression is part of the illness which is not helpful and also mentions LP to my dismay.

    EDIT:

    thinking about it all, to have someone in the public eye talk about ME can be helpful but the benefits are reduced if they make blanket assertions such as depression is part of ME, LP may help and you can have a normal and good life again, when clearly not the case for all and which should be acknowledged. If she continues to speak out, I hope she educates herself more on the levels of disability and varied prognosis. I am happy she has improved though as she has been through a lot
    MeSci, SOC and maryb like this.
  10. Bob

    Bob

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    There are now loads of copy-cat articles about it. Many of them focus on the depression, and not on the ME.

    But many of them do state that depression and ME are two separate conditions.

    Unfortunately many articles carelessly conflate the two, e.g:
    "She was finally diagnosed with ME, the chronic fatigue syndrome, and treated with anti-depressants."

    But perhaps the confusion comes because Martine suffered both depression and ME at the same time, and she didn't know what was going on for her, especially because she had a late diagnosis:
    "I don't know if the ME or depression came first, all I knew was life felt like hell every day"

    Her experiences will be familiar to many of us:
    "I lost friends along the way who misunderstood what was going on, plus some in showbiz who couldn’t understand why I was saying no to jobs."
    "I've had the worst seven years ever."

    Nice to see that her husband stuck by her:
    "her doting husband McManus, 29, who she married last September after five years of dating, has stood by her"

    Some articles:
    http://www.herald.ie/news/martine-i-lost-7-years-battling-me-29599747.html
    http://www.digitalspy.co.uk/showbiz...-depression-me-battle-every-day-was-hell.html
    http://www.huffingtonpost.co.uk/2013/09/22/martine-mccutcheon-depression-_n_3970450.html
    http://www.parentdish.co.uk/2013/09/23/martine-mccutcheon-wants-a-baby-after-me-hell-depression/
    http://www.express.co.uk/news/showb...McCutcheon-I-was-so-depressed-I-wanted-to-die
    http://www.express.co.uk/news/showbiz/431385/Martine-McCutcheon-Depression-ruined-my-life

    It seems that the original interview was with the Sun, but its behind a firewall:
    http://www.thesun.co.uk/sol/homepag...heon-on-depression-career-and-bankruptcy.html

    Here's quite a helpful article that also explains what ME is, and links to the UK's ME Association for further info:
    http://home.bt.com/lifestyle/familyhome/wellbeing/martine-reveals-me-battle-11363835339693
  11. Guido den Broeder

    Guido den Broeder *****

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    At the time of My Fair Lady she was diagnosed with hepatitis c, glandular fever and throat infections. She then supposedly recovered by following an exercise regime and something called the 'blood type diet'.
  12. Snow Leopard

    Snow Leopard Senior Member

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    I'm personally not convinced that there is a difference.
  13. Snow Leopard

    Snow Leopard Senior Member

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    So do I.

    But it does irk me a little when claims are made about recovery or remission when the person in question is still ill. This is even more harmful like in this case where the average person is just going to think (after reading) that she just took antidepressants, exercised or whatever and magically got better when it simply isn't true.
  14. alex3619

    alex3619 Senior Member

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    Someone claiming recovery when still ill is not unknown for both LP and CBT treatment. Its not a lot different from brainwashing.

    M McC does not claim recovery, but I wonder how much of what she is attempting to do now is possible. If she has ME and paces herself there is a chance she can have a really good life. On the other hand I know of many patients who tried this only to relapse and become much sicker than they were before.
  15. rosie26

    rosie26 Senior Member

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    I felt irked as well Snow Leopard , I think I have just grown tired of people saying "you will recover" "you'll be fine".

    Is really does sound like she is not quite recovered but so much better than she was. And it does not help when depression is added to the mix as it sounds like it is greater than the physical symptoms of ME itself, which in ME it is not. I have just read through above posts very quickly - so could be a bit out of sync with conversation.
    SilverbladeTE likes this.
  16. anniekim

    anniekim Senior Member

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    I know this can be an argument going round and round and until we have more diagnostic markers so much is unclear. I just wanted to share that my understanding was post viral fatigue is quite well documented and can last for a a couple of years or so but is ultimately self limiting.

    There was a case of a famous ballerina here in the Uk who got a bad case of glandular fever and took two years to recover but she never referred to it as ME but just slowly and surely got stronger and ultimately fully recovered.
    SOC, redrachel76 and Purple like this.
  17. Esther12

    Esther12 Senior Member

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    It certainly has a better prognosis early on, but long-term follow ups seem to indicate long-term problems too.
  18. Firestormm

    Firestormm Guest

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    MeSci and Bob like this.
  19. Bob

    Bob

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    That's a very nice message that Martine has posted. Thoughtful, caring, insightful. The only bad thing is all the crappy advice that she's been given (which is typical for us), such as doing LP, but at least she calls it a training program, which it is, and doesn't make any claims re its usefulness.

    I haven't read through all the comments on her Facebook page, but she's drawn such a big crowd of followers, that I can see her becoming an advocate or 'ambassador' for ME patients, as she gets to know the ME community.
  20. dannybex

    dannybex Senior Member

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    While I certainly understand the valid arguments against anti-depressants (esp in this context as they're so often claimed to be the reason for the ME/CFS) -- they always made me much, much worse when my bosses insisted I go to a REAL doctor back in 2000 -- at the same time, it's definitely possible that someone with severe ME/CFS can become severely depressed (as did the late Thomas Hennessy), so to separate the two in that regard seems rather odd to me.

    Depression, including very serious depression can be a part of almost every severe illness, including ME/CFS, but that doesn't mean it's the cause of the illness, just perhaps one of the end results of having it long-term.
    justy and Bob like this.

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