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please join this facebook group to reinstate Dr John Greensmiths

Discussion in 'General ME/CFS News' started by pollycbr125, Apr 2, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    hi all im sure some of you know john he runs http://www.mefreeforall.org/ . John is one of the me/cfs good guys . yesterday for some unknown reason facebook deactivated his account . I have been in contact with john and he has no idea why this has happened , he is trying to get it sorted .

    in the meantime i have set up a facebook group to try and get john reinstated please show him some support http://www.facebook.com/group.php?v=wall&gid=110471515643212

    you can also email complaints to facebook at appeals@facebook.com

    i sent them this message .......

    As an me/cfs sufferer i urge you to reinstate Mr john Greensmiths facebook account . As far as i am aware John had never posted anything offensive or infact breeched facebook rules . ME is a truly devasting illness many of us are housebound and our only contact with the outside world is often social networking sites such as yours .
    John posts valuable links regarding the latest research , the illness itself and other related articles . Many people rely on John to know what is happening in the outside world . To remove John from facebook is doing the me/cfs community a great diservice and alienating me/cfs sufferers even more than they already are .

    Therefore please reinstate Johns account asap .The work John does is invaluable and i for one am very grateful for all the hard work he does for the me/cfs community .


    i got the following automated response .

    Hi,

    The Facebook Team has received your inquiry. We should get back to you soon. In the meantime, we encourage you to review our Statement of Rights and Responsibilities (http://www.facebook.com/terms.php) for more information.

    Thanks for contacting Facebook,

    The Facebook Team

    apologies if i have posted this in the wrong place please feel free to move if neccessary . thankyou x
     
    pattismith likes this.
  2. Min

    Min Guest

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    joined it

    this is awful, he does wonderful work and is always extremely polite
     
  3. leelaplay

    leelaplay member

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    thanks for doing this polly...........

    I HATE (yes - a very loud voice) that they would cut off an account with no explanation!

    I urge everyone to join + send in an email appeal.

    In my email, I just said that I was too sick to write my own letter, and was copying one from a fellow me/cfser as it expressed my ideas and concerns.
     
  4. Jody

    Jody Senior Member

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    I joined the facebook group.

    Apparently obliteration of an account is something that can happen to anyone, anytime. This is what I heard today at any rate.

    Gave me pause, since I have a facebook account too and I'd hate to lose everything I have on there ...
     
  5. justinreilly

    justinreilly Senior Member

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    Yeah, this happens a lot to people for no reason. Sometimes, if the person didn't do anything wrong and she or he bothers them long enough, they will reinstate the account. I hope this happens to the good Doctor!
     
  6. Tammie

    Tammie Senior Member

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    I joined the grp, too. I really hope they do reinistate him - he does a lot to help us.
     
  7. Jerry S

    Jerry S Senior Member

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    Me too. John is a regular contributor to Co-Cure. He should be reinstated.

    Thanks for posting this, pollycbr125!
     
  8. Tarkus

    Tarkus Guest

    I only joined this group only a few moments ago and the very first thing I came acroos was the news that Dr John Greensmith had been censored.

    I have, over along period, read his input elsewhere and have always found him to be a sensible, well balanced contributor .
    He has represented the cause of those suffering from ME in a dignified manner.
    Surely there has been a mistake here?
     
  9. Jody

    Jody Senior Member

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    I'm sure it is a mistake, and not targetting him. I have been hearing from more and more people about the same thing happening to them or someone they know. Either a glitch or a way to keep accounts from getting too big for Facebook to handle?
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I'm having problems with Facebook also. Some are complaining of possible viruses in certain parts of Facebook.

    I can't upload photos and it says my e-mail address doesn't work, but yet it does. I try to reconfirm my e-mail address and I get to some instructions that I can't follow.

    Tina
     
  11. pollycbr125

    pollycbr125 Senior Member

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    thanks everyone for spreading the word we are now up to 337 members .

    john is still getting no joy with facebook , it seems actually speaking to a human is nigh on impossible , facebook really needs to look at this issue .

    I recieved a message from john yesterday he would like to thank everybody for their concern , well wishes and emails to facebook on his behalf . He has just sent another email to facebook which i have permission to repost ........ see below

    Good Morning,

    You may be aware that my account drjohngreensmith mefreeforall.org was disabled, three days ago (1st April 2010).

    I was surprised and shocked because I am not aware of any offence I have committed. I certainly didn't intend to and would like to know what it was, so that I can't do it again. It is possible that someone acted maliciously or there was a random act of vandalism.

    I have, subsequently, been flattered and quite touched by the level of concern that there has been for me. Sudden disruption tends to raise two immediate questions: did I (rather than Facebook) block them - and that could cause a slur on my reputation or cost friendships and (2) concern for my health and welfare.

    Apart from contacting me or our website www.mefreeforall.org directly, some kind souls have e-mailed appeals@facebook.com to ask to have us restored.

    Cheryl Benson has even started a facebook page for me here
    http://www.facebook.com/notes/chery...-no-notice-_pls-write-call-faceb/382029406165
    and Jo Chamberlain here
    http://www.facebook.com/group.php?gid=110471515643212&ref=nf#!/group.php?gid=110471515643212&ref=nf

    We all hope that you will restore us as soon as possible. In addition, it is important for us to know why this account was disabled in the first place to prevent anyone, accidentally, repeating it. There is no point in simply referring us to FAQs or the Help Center, to go round the loop yet again. We are human beings who need a human being to explain it to us. It is, of course, in Facebook's interest too because if this is happening to us, it will be happening to other users and it could be cleared up for everyone. If the aim of Social Networking is to increase the number of contacts people have, there are some serious impediments that need addressing.

    I hope that you will treat this with some priority now. It would be nice to get back to where we were before the Easter holiday is over.

    Yours sincerely
    Dr John Greensmith
    ME Free For All.org
     
  12. JillBohr

    JillBohr Senior Member

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    I was wondering why I have not heard from him. I love his face book page. I will defintely do what I can to get him reinstated.
     
  13. parabola

    parabola

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    Does anyone know what happened to Dr Greensmith? He was a regular contributor to the letters page of my regional newspaper a few years back, raising awareness, but his letters stopped suddenly.
     
    Esther12 likes this.
  14. Esther12

    Esther12 Senior Member

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    When I saw this thread bumped I though 'I've not seen anything from him for a while'.

    No idea if he's still active or not.
     
    parabola likes this.
  15. Sasha

    Sasha Fine, thank you

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    Hutan likes this.
  16. Dolphin

    Dolphin Senior Member

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    I haven't heard from him in years and I don't know anyone else who has (it has come up in other situations also). We used to exchange Christmas cards and I knew him for a number of years so I was probably closer to him than many but haven't heard anything.
     
  17. slysaint

    slysaint Senior Member

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    I was just looking out contacts in my address book to send out emails to people re the MEA petition for NICE, and found Dr John Greensmiths email address which is no longer valid.
    Just been searching on the net to find out what happened to him and found this thread!
    Still no news I take it?

    So given what is going on at the moment.................here is one of his articles:
    "
    It is a quite legitimate, understandable, early step in any scientific enquiry to set out with a theory. The traditional approach is to test a hypothesis and, once it has been proved valid and reliable, with a high degree of probability of repetition, usually 95% or 99%, accept that the suggested treatment is appropriate and safe. Often, treatments are tested thoroughly under laboratory conditions, or on animals, before they are given to patients, to maximise safety.

    In M.E. research, the approach has too often been to skip the testing and expect M.E. sufferers to be guinea pigs (for example in the PACE -* Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation*and FINE - *Fatigue Intervention by Nurses' Evaluation* - trials, which are being carried out on patients before the results are in and have been assessed, a practise which would be unethical in some drugs and animal experiments).

    No one, as yet, has a cure for M.E. but some people claim to have treatments which "help" people with M.E., though the ways in which this help are clearly observable, such as a return to some measure of a previously healthy life, like returning to work or school, are not always obvious.

    When people have been ill for long periods of time and have tried everything suggested without success, they tend to be less critical of and take bigger gambles with, more radical treatments. There is, undoubtedly, an opportunity for charlatans but, even when the practitioners are well-intentioned, reputable and honourable, they only have a theory. Interestingly, the advocates of different radical treatments advance different theories of M.E. with equal firmness that theirs is the correct one - the hypothalamus (Mickel Therapy), amygdala (the Gupta Programme), adrenaline (the Lightning Process) - yet they all remain unproven theories.

    No one - not even the practitioner - knows how they work. There is no scientific evidence for them. They are not approved by any medical organisation. They have not been independently reviewed and rely only on recommendations from people, who claim it has helped them, not balanced by any dissatisfied customers, who may be too ill to speak out or fear the consequences if they do. They are often, quite secretive, pyramid-sold treatments, practised by a motley crew of people with disparate, indefinite, qualifications, such as 'life coach'. There are no follow-up studies, or statistics available, to check whether M.E. sufferers relapsed; anecdotal evidence suggests that many do. A single session often costs as much as some people, on benefits, have to manage on for a week. They rely on faith and put the responsibility to get better squarely on the patient. Thus, if the M.E. sufferer says they feel better, success is claimed for the treatment but if they say they have not improved, it may be said the patient was somehow negative or not ready for it.

    In other areas of medicine, treatment is given even when the causes of an illness are not fully understood and the scale of possible side effects of treatment is unknown. The stakes are high. For example, we are now seeing some of the undesirable after-effects of chemo- and radiotherapy; I'm sure that the people behind Thalidomide had nothing but good intentions; frontal lobotomies seemed a good idea at the time. This is not scaremongering. We know, for sure, these things happen; we do not know, for sure, how many cases there are of damaged M.E. patients and whether any improvements would have been achieved without any treatment at all.

    It is probable that there are many more M.E. sufferers, who have been badly affected by a particular treatment than we know about because the victims are too ill, after it, to speak out; some are daunted by the energy required to respond publicly; some fear threatened litigation, even bullying. We simply don't know the figures because the work hasn't been done. Furthermore, claims of success for M.E. patients do not take account of later relapses, again because follow-up studies have not been done and the statistics are not available.

    It is also possible that the success doesn't belong to the therapy claiming it because the patient may not have had M.E. at all but some other illness misdiagnosed. Or, credit may, instead, belong to some other intervention taken simultaneously, which has not been considered, in a multivariate analysis. Or, improvement may be due to the passage of time, during which resting has had an ameliorative effect. Indeed, pacing is recommended as the treatment most likely to show a beneficial effect by most M.E. sufferers, though it does require discipline and is easier said than done.

    For some, it's too late once the damage is done. Patients considering any exercise treatment, even in clinics with recommended therapists, should take note of the experience of M.E. sufferers who had well-meaning advice from GPs to exercise and finished up in wheelchairs, or bed bound, from which they have not recovered their previous level. There is also experimental evidence, in this country and in Belgium, that even the more orthodox recommended treatments have no lasting benefit for people with M.E, or leave some irrecoverably worse than before.

    The advice of this Research Psychologist and 20-year M.E. veteran is that it is better to have no treatment at all than one which does you no good, or leaves you worse after it. Remember, the burden of proof is on those recommending the treatment, not for patients to acquiesce for any other reason than firm evidence.

    Yours sincerely

    Dr John H Greensmith
     
    Last edited: Jul 11, 2017
  18. parabola

    parabola

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    Does anybody know what became of him? I remember him writing into the newspapers
     

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