1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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UK: House of Lords to debate PACE study, Weds 6 Feb 2013

Discussion in 'General ME/CFS News' started by Sasha, Jan 31, 2013.

  1. peggy-sue

    peggy-sue

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    Unfortunately "reporting" (or not reporting) can have incredible effects on statistics.
    When the police need to get the crime figures down, they are encouraged to report fewer (minor) crimes - and when the govt. want the figure to go up to scare the public, the police are encouraged to report more (minor) crimes.
    This information comes directly from my lectures in crimminality.
    There are the questions of whether or not Autistic spectrum disorders are on the rise - or are just more folk getting diagnosed and reported now; when before they would have been labelled "spastic" and shoved into an institution.

    And you are absolutely right Golden. "Munchaussen's-by-proxy" was becoming an epidemic.
    But it was one of bad medical diagnostics - and it made everything a hundred times worse for the parents and the children who suffered.
  2. pollycbr125

    pollycbr125 Senior Member

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    You are very lucky Firestorm as there seems to be pretty much sod all available to the rest of us . Perhaps we all need to go on a pilgrimage down to cornwall although saying that I have a friend in cornwall who also has a ME diagnosis and she has been hitting her head against a brick wall trying to get help :confused:
    maryb, Min and Valentijn like this.
  3. Firestormm

    Firestormm Senior Member

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    Polly, the ME Service has been pretty much suspended for the past year or so following Pinching's retirement but has now gained the support of the GP commissioning group and effectively relaunched. Has your friend spoken to her GP about a referral? Or perhaps she was already on the waiting list? If so I'd suggest she or her GP contact the specialist lead. I can provide details if you want to 'converse' with me.

    The model that has been now put in place for Cornwall is also been taken up by Plymouth/Devon and there are plans for it to spread across the South West I understand. I realise what we have fought for has not been replicated elsewhere.
  4. golden

    golden Senior Member

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    could i ask what are these services for m.e.?
    referral/waiting list for what?

    it maybe useful to have a model template to explain to g.p. what support looks like.
  5. golden

    golden Senior Member

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    i found something on cornwall services - apologies i am about 25,000 conversations behind :)

    http://www.meassociation.org.uk/?p=10275

    they seem to be suggesting a greater input from psychological services.
  6. alex3619

    alex3619 Senior Member

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    Anyone care to bet that that Somatic Symptom Disorder will go the same way as Munchaussen's?
    peggy-sue, Roy S and Valentijn like this.
  7. Firestormm

    Firestormm Senior Member

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    After Pinching retired there was some genuine concern that liaison psychiatry would have a role and that we wouldn't have a medical expert in place. The Trust dicked around claiming they didn't have money for the service. This is the short version because I have to go view a property shortly.

    Eventually, the Trust and PCT after MESH and members petitioned the Clinical Commissioning Group successfully, came up with a financial model that would allow initially 300 referrals a year with on average 6 sessions for each patient. The service will focus in the main on the severe patient. However, not all patients will need 6 sessions and the Severe patient will be afforded more than this.

    Some patients will perhaps only need an annual check-up with the medic for example. And re-referrals are of course perfectly reasonable - point is that healthcare is front-loaded in terms of costing. Only new patients get the cash. It seems daft for a long term condition but there we are.

    The Team comprise: Neurologist, GP with Special Interest, Consultant Occupational Therapist (Lead), 3 OTs, and a consultant clinical psychologist. Also a dietitian and physiotherapists should they be required. Unfortunately, we have yet been unable to attract a consultant medic to actually replace Pinching and we are down one GP with Special Interest (we did have two). However, medical hours remain the same.

    The Neurologist is new and her time has been obtained solely by the intervention of the specialist lead: Carol Wilson. The Service does deliver help and support in a patient's home. As you know there is no specific treatment for ME that is delivered by way of a drug, and I am only myself beginning to make use of what is on offer.

    Previously I had only been seen by Pinching on 3 occasions I think. Dr Gardner is good although he has not prescribed anything for me himself - but then he has endorsed what Pinching prescribed previously. The support from the Service in terms of benefit letters as well as - I understand - in support with coping with the condition is good. Far better than some of the horror stories I have heard expressed elsewhere.

    There is no allocation of psychological cause to ME by any of the staff. My OT the other day on her first visit was talking about the immune system - Pinching's influence perhaps. It is more about learning to manage what we have now. Learning how to rearrange our lives and activities to better cope.

    Any intervention is not suitable for everyone. Some don't need help and support that is offered. Some will disagree/disapprove of it. The demand for a provision though in Cornwall was overwhelming and it didn't really take a great deal of effort to 'persuade' the GP commissioning group to demand provision was honoured in the way in has been.

    We were still waiting for the embargo to be lifted. All this new model was supposed to go 'live' in January. They are still waiting to be placed on the GP Referral Management System (March now apparently), and more importantly, we were waiting to hear that the letters to pre-existing patients who had been 'on hold' for ages, had been sent out.

    And before anyone asks - I don't know any more about the involvement of the Neurologist precisely. But the mere fact that we have one attached to the Service and who has - I understand - been willing to help is a 'muted' cause for celebration. Especially given what is happening - or not happening - elsewhere in the country.

    Edit:

    Sorry. I forgot - said I was in a hurry :)

    They will be advertising for another GP with Special Interest. If a consultant medic can be enticed into the Service then they will of course welcome him/her with open arms.
    barbc56 likes this.
  8. Firestormm

    Firestormm Senior Member

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    The NICE Guidelines recommend home visits for the severely affected. Also see their 'costing template'. Using the Guideline to advocate for improvements locally is but one method we employed (not that we really needed too) to try and ensure funding.

    I did not get to read all your comment before moderation, but I will say this. I fluctuate between moderate and severe. That is based on the definitions most generally used. I have rarely entered - what was - the 'most severe' category and in that I am fortunate indeed - as I suspect are you.

    For most of my 'career' with this condition I have had no help or support. I am now getting far more - in as much as that goes - since coming to Cornwall 5 years ago. When I was not getting help I was - when the 'natural' course of this condition permitted and/or when I was highly motivated to 'push on through regardless' or when I was just bloody minded and couldn't give a stuff about the consequences - or because I failed to understand the limitations this condition placed on me: able to work, to study at college and university, with varying degrees of success and duration.

    The help I am receiving - have received - since being in Cornwall has been 'bitty'. That is to say, until we were able to help with a complete review of the service it was delivered peacemeal. They were overwhelmed and whilst they did strive very hard to deliver a service to their patients they were constrained pretty much by finance. My visit from the OT the other day, was from a referral made in December 2011!! With the new model in place it is hoped that such delays will not be a feature in the future.

    What is offered is diagnosis, assessment, medical intervention - symptom pharmacology alongside one's GP, therapy, help and support. The belief is that their help will not result in a cure. Do you understand this, Min? Only I get the impression that regardless of what I say to you, you will disapprove and disagree. They are not practising magic or selling some magic pill or quacky 'test'. If I had had this level of intervention (and I repeat I have had only one visit at home from the OT and several consultations with Dr Gardener the GPwSI since Pinching retired), I might have better understood my limitations AND had someone BELIEVE in me.

    I will always remember my first visit with Pinching. I refer to it now as him 'slapping me about the face'. It was a huge WAKE-UP CALL. And since then my limited experience with Carol Wilson, the OT and Dr Gardener has been that they GET IT. That does not imply that they are brushing me or anyone else off. Or that they are not aware of the science and the research directions and developments. They are on the ground and dealing with people with this diagnosis daily.

    THEY have some experience. They promise nothing. 'Learning how doing things differently can help you manage your condition more effectively' is taken from the front of the leaflet sat here in front of me. I mentioned mindfulness before and all the staff have been I am told sent on these course recently. I am not a therapist or doctor but when faced with a genuine person who is struggling to manage and for whom little is known as to cause or specific treatment - doing nothing is not an option. Being realistic is. And I think they are being exactly that.

    That's my experience and the experience from those with whom I have spoken. Also from the letters I have read in support of maintaining and extending the ME Service in Cornwall. There are always areas that we as 'service users' might like to change or better inform - and through our direct liaison with the Service and with the GP commissioning group we do our best to try and achieve this.

    I am about to move from my parents home to again try and live independently. I am in a better place in terms of quality of life, functionality (mental and physical) than I was when I arrived 5 years ago. I cannot say in all honesty that this improvement has been a direct result of the ME Service. A lot has been off of my own back and with the help and support of my parents and family. Also help from my GP and other medical professionals. I don't suppose you would be one to congratulate me on my achievement - no matter how long it lasts - or on the achievement that we as a local community have achieved in saving our ME Service.

    All too easy to bloody criticise.
    barbc56 and alex3619 like this.
  9. maryb

    maryb iherb code TAK122

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    Firestormm its not about criticising you personally, I am so glad you have improved physically and mentally from where you were. Any improvement in a ME patient is to be celebrated.
    My argument is with the staff who are providing the services, why aren't they coming out strongly and saying to the people who hold the money and power, this service may improve the lives of some but its not the way forward with regards to diagnosis>cure these patients need much much more.
    But they don't they're all glad to have a job and in the cosy world of the NHS they all stick together and don't EVER critisce or complain. Thats why we're stuck and that type of service is all we'll ever get, even you can see its not enough.
    It makes me so angry, what we need is a whistleblower extraordinairre in addition for the MRC to take biomedical research into this condition a priority. The anger is not aimed at you.
    Shell, Firestormm and Valentijn like this.
  10. Artstu

    Artstu Senior Member

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    Without wishing to sound like I'm knocking the medical service we receive here in the UK, they don't actually offer anything that someone with a bit of common sense wouldn't have already worked out for themselves. You make it sound wonderful, and to some it is. However I'd much rather they spent all that money on some proper research into the illness.

    Actually scrub that, I am and do knock the service we receive, it is rubbish and a complete farce.
    Shell, irwinsturtle, maryb and 4 others like this.
  11. Gijs

    Gijs Senior Member

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    “There are three kinds of lies: lies, damned lies, and statistics”, Benjamin Disraeli.
    White et. al., have worked verry hard to uprate there outcomes of ‘recovery’.
    1. The population is not representatieve because the patiënts were able to travel to therapists (much patiënts can’t),
    2. Changing protocol after research is scientifcly not done,
    3. White e.a. suits are standard for recovered CFS patients in the following objective way:” The mean (SD) scores for a demographically representative English adult population were 86.3 (22.5) for males and 81.8 (25.7) for females (Bowling et al 1999) . We derived a mean (SD) score of 84 (24) for the whole sample, giving a normal range of 60 or above for physical functioning”.
    White e.a. use a score according to their representative of the general population (60) but without a breakdown and sufficient to take into account age, which varies in proportion and decreases significantly with age according to table 3 (Bowling et al 1999) http://jpubhealth.oxfordjournals.org/content/21/3/255.full.pdf html
    The minimum score or above for normal physical functioning according table 3 presented data (Bowling et al 1999) compared with the norm of White e.a. but now taking statistically correct age into account gave us the following results: (16-24) score: 83.4 (25-34) score: 81 (35-44) score: 79.9 (45-54) score: 66.3 (55-64) score: 51.7
    ‘’The average age of the participants in the study of White et al, 38, 77% of them were female and 93% were of white ethnicity’’. The average age of CFS patients is 38. You can see in table 3 that the studied group of CFS patients have a mean age of 38 and falls in category age (35-44 years) tabel3. The minimum score or above for normal physical functioning for this group (35-44) is a score of 79.9. This is much higher then the score 60 stated by white e.a.
    In summary: You can see that the average score in the rise of the age significantly decreases. A certain group of age may thus greatly affect the outcome. According to White et al 2013, 22% of CFS patients after following cognitive behavioral therapy restored. These researchers use a minimum score or above 60 physical functioning Rand-36 in general 84 (24). This data was not broken down into different groups of age. The average age in the study by White e.a. was 38 years. This requires a minimum score or above 79.9 for physical functioning according to the presented dat table 3 (Bowling et al 1999). The norm of recovery need to be adjusted for each group by age. The percentage of CFS patients (22%) that meets the standard definition of recovery state to discussion.
    White e.a. would have to make a breakdown into different age groups and adjust the standard recovery norm for these groups by presenting the data.
  12. Firestormm

    Firestormm Senior Member

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    Thanks. Bold: I do not know. I would like to think that as Carol helped write the Guideline (although I know she wasn't happy with all of it but am only aware of some parts she didn't like), and is - as was said - a member of BACME, that word is getting out. I don't know that it is but I'd like to think that it is.

    I think that sometimes we are reading 'science papers' and taking these things literally as being representative or a blueprint of what happens in practice.

    Look, even if the OT and psychologist (who I have yet to meet) can help me with my general (don't laugh) loss of confidence, my difficulty in managing my own and other people's expectations as well as helping me organise my new home to better take into account my physical and sometimes sensory limitations - I will count that as a plus.

    My approach to all the help (good or bad) over the many years has been 'suck it and see'. If I can take something from their efforts and apply it to my life with all this crap then I will. Whether or not any improvement in my 'quality of life' borne as a result of their help appears to impact on my disability is a mute point when we don't know enough about ME. Not like we can test for ME before and test for it after these interventions.

    Maybe one day we will be able to and I look forward to that with some trepidation as well as enthusiasm.

    When there has been nothing offered before, even something that you or I might after several years of struggling on our own, find 'common sense', it can appear to be like an oasis in a desert to a person who is lost ;)

    But more importantly than that it is the understanding and belief that for me would have been priceless had it been available from the start.

    I do NOT make it sound wonderful. It is what it is and the experience will be completely different for each of us. Some will take nothing from it and some will find ideas and practices that are new to them and actually do help make a difference. Again, it is for me the whole belief and knowledge that this time round there is something in place to provide the support I have never had before from the NHS. And when I crash I can pick up the phone and ask for and receive help.

    There has been a movement in the past - probably still exists - that wanted to see all ME Services closed down and for the 'saved money' to be handed over to research. It is one suggestion. A ridiculous one I happen to think. To leave people with nothing would be to wind back the clock. Some people though feel rightly or wrongly that they have nothing. No help and No support. As I said perhaps Cornwall is unique but that doesn't make our situation down here perfect. Far from it. Look how long it has taken for me to get the OT to honour the referral! But things I hope are changing for the better - at least in terms of funding and reliability - down here in the far south-west.

    Patients like me will still - even if only in the back of their minds - expect something significant to come from this help that is offered, and - to return to the post topic - I do blame at least in part the whole business surrounding PACE. I do not know the extent to which GET for example is part of the Therapy offered by Cornwall - yet. I get the strong impression that 'activity management' is at the core of what it is they do for anyone - whatever their categorisation - with this diagnosis who comes to them and is accepted as being in need of help.

    I want every single person with ME to be offered without needing to ask the kind of pharmacological help that I have had to fight at times - at others not - to get. I also want everyone to be offered this kind of approach in terms of therapy and support from a dedicated team of professionals. NICE has some things contained within it that I personally would rather was downplayed, and others I wish were more prominent - pharmacology being one of them. But at least with have a Guideline to be used when advocating for service provision.

    But there are things in NICE that I want to work with and one is for research into patient outcomes to be carried out on the ground. This as I have said several times before might provide us with some knowledge of how people benefit and a better understanding of what these interventions comprise on the ground.

    I am not scared of GET or CBT although having been on forums now for a couple of years I can see why some people might be. It is the application of help and support regardless of who the professional is - and that professionals competence and understanding - that to me is far more important.

    As a patient I can always say 'No'. As a patient I work with these professionals even the ones I don't happen to like very much and it is hard. Bloody hard. Because no therapy or treatment or drug means that I don't have to do things for myself.
  13. Valentijn

    Valentijn Activity Level: 3

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    Well, it's good you know what you're getting into then. Because from what I've seen, GET and CBT are a central part of the Cornwall treatment program. The only difference between Cornwall and the rest of the country is that 1) you can get your "therapy" at home and 2) it won't be shoved down your throat.

    But at the end of the day, they're still attempting to cure deconditioning and/or false illness beliefs. Have fun with that.
  14. Firestormm

    Firestormm Senior Member

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    How is life on your planet, Val? I do not intend having 'fun' of course. It what is afforded me amounts to shit then I shall be the first to say so. Is that alright with you? How are things in Holland?

    Here's the Lothian Trial Service that I was reading about earlier:
    New Lothian ME-CFS Service at Astley Ainslie Hosptital: http://www.edmesh.org.uk/2013/01/new-lothian-me-cfs-service-at-astley-ainslie-hosptital/


    Knock yourself out with that one! A 2-year trial offering nothing to severe patients or a home service but one that hopes to gather data. Maybe it will shed some light on delivery, maybe it will prove the pin that bursts the 'psycho-social' balloon?
  15. peggy-sue

    peggy-sue

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    That is appalling news, Firestorm. AfME and NICE have truly put the kybosh on any hope of progress in Scotland.
    The Astley Ainslie department is all psychology, says it will only accept folk who have been diagnosed with and have accepted the diagnosis of "chronic fatigue syndrome" as per the BPSchool only. and they won't do counselling or anthing like that. It appears to be completely confined to weaselly stuff.
    My only hope is in Scottish independence.
    (which is not an anti-English thing - it's an anti-London-big-business, anti-Tory; pro-social services, pro-health, pro education, pro-EU thing. I'd far rather it was the south east coast of England that was "dropped" from Britain - let them fend on their own, without bleeding the rest of us dry!)
    Firestormm likes this.
  16. maryb

    maryb iherb code TAK122

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    F - we'll have to agree to disagree. I don't want or need CBT, I'm mentally okay without help or support from the NHS, have a positive attitude and have a supportive family. Okay I get it that many don't, but thats not about ME its about dealing with a chronic illness alone.
    I don't need GET - what I do is listen to my body very carefully - if it means ceasing all activity immediately thats what I do, I know best what my body can or cannot do and believe me if I can do it I will, I'm no couch potato.
    You can't build up your excercise limits with this illness, each day is so different.

    What can a neurologist, physio, or OT do for ME symptoms? such as noise sensitivity - where even a plastic bag being scrunched up seems like torture, light sensitivity , skin sensitivity, where even the shower jets set on gentle hurt, inability to read even a newspaper for more than a few seconds, inability to tolerate even a drop of alcohol (okay not important in the grand scheme of life) FM and headache pain - no thanks I don't want pharma drugs the're worse than the pain. Of course as many others I could go on and on.

    I've worked with NHS staff for many years and don't have a problem with their work per se but as for treating ME patients specifically - no no no - set up centres for people with chronic illnesses and see how much difference there is to the ME provision.
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  17. Firestormm

    Firestormm Senior Member

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    Yep the Scottish project doesn't appear too positive does it? And with no CPG representation either I'm not too sure what can be done other than perhaps to hope that those who are enrolled undertake what is offered with open minds and report realistically. AND that this is recorded realistically.

    You are right Mary. What is provided is what is provided. I think if I had had this support early on I wouldn't have struggled for so long not understanding and getting more and more stressed out. Like I said, if the support I receive now does nothing more than allow me to talk to someone who listens, to try and learn to better accept my limitations and to be more realistic with what I want/need to achieve as personal goals - then so be it. I don't expect anything more and never really have.

    'Tea and sympathy'? Perhaps. I think it is more practical than that. Some of the practical approaches are as has been said perhaps 'common sense' but there's nothing wrong with reinforcement and keeping in contact and being appraised by professionals helps me in terms of benefits etc.

    I am afraid I do have some 'bad habits' that are probably not helping me with management of all that this entails. I tend to push it when I should be resting and come on-line by way of a rest only to get 'engaged' when perhaps I shouldn't, or undertake projects unrealistically, for example. It won't hurt I don't believe to have someone else helping me and that's the way I look at it.

    Can't speak for others who use or have used the Service in Cornwall. For me meeting with Pinching when I first came here and listening to what he had to say was a 'game-changer'. But that's just me. Knowing these folk are there when I do experience a dip is comforting when before there was absolutely nobody.

    All the very best and I hope you are able to continue managing as best you can.
  18. Valentijn

    Valentijn Activity Level: 3

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    CBT/GET will usually start with charting activities and reactions, then reducing or proportioning activities differently (essentially pacing), at which point you will be told to start slowly becoming more active - also known as GET. The earlier pacing aspect is somewhat useful, but it can be very harmful, both physically and psychologically, when it transforms into GET.

    Pinching, who was running the Cornwall center until recently, was a bit more appreciative of the biological aspects than most other BPSers, but still had a typical BPS psychological view of ME in many ways. For example, from Prescribers' Journal 2000:40:2:99-106:
    Artstu likes this.
  19. Firestormm

    Firestormm Senior Member

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    Yeah. The OT and Pinching for that matter were talking about establishing a 'baseline' or something. It's what I have always struggled with. The temptation - with me - is that when i am feeling better generally I will overdo it and then suffer as a result. Maintaining this 'baseline' and then learning how and when to 'do more' is very difficult especially when the condition itself fluctuates.

    Of course I recognise the effect external stressors can have on me these days, and I also recognise that this is not a lot I or we can do about the stress caused by our condition or that caused by other people. But I hope that maybe I can better learn how to manage.

    What I do realise of course is that we are not living in a 'fluffy cushion' world of isolation. There are things that need to be done on a daily or weekly basis - depending on your level of support I suppose. The great stress on me at the moment is making the move to independent living once more.

    Trying to get agents and landlords to 'give me a break' could prove difficult. A lot of this I think is in my own mind but I can't help but feel 'the world is against me'. Until of course I do manage to get a place to live and then I'll probably think what a twat I have been :)

    Edit:

    Have a listen to this if you are able: http://www.bbc.co.uk/programmes/b01qjb1y A dose of Susanne is just what the doctor ordered. Well, for me at any rate!!
  20. maryb

    maryb iherb code TAK122

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    But F don't you think we should expect /demand/advocate for more? Like you (perhaps?) I'm a bit older in the tooth, paid my taxes and NI all my working life - please don't anyone come up with the fact that NI contributions don't pay for the NHS - you get my drift.
    I damn well do think we should have more than we get. Accepting its better than nothing just doesn't cut if for me.

    What about the young 20/30yr olds with ME - wanting a life and career, I've had that, they deserve it too, should they settle for help with managing their illness, benefit claims etc and be thankful to the NHS, surely not.
    I'm not saying that younger people are more deserving, but they are the future they have so much to give to society in every way.
    We are losing their potential, the stupid idiots who run NICE,MRC/BMC NHS just can't see it.
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