Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I wasn't alleging anything, and I did say 'allegedly' and 'maybe it wasn't true', so it was really an example of a possibly-false allegation elsewhere, not made by me. There are hundreds of false allegations about us, and we often report them.

    I have edited my message, but I can't remove it from the OneClick group. Perhaps you can contact them or post a message there?

    BTW, here is the PR post that alerted me and others to the allegation.

    It should be clear that I and most other PR members doubt the allegations against the 'ME lobby'. They are a particularly nasty form of attack on us.
     
    Last edited: Jan 17, 2015
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  2. Esther12

    Esther12 Senior Member

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    I totally took that post as just an example of allegations that fly around, rather than evidence that Charles had punched someone.
     
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  3. Bob

    Bob

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    To be fair, I'd be really pissed off if someone was repeating tittle-tattle from elsewhere, and said something like "oh did you hear that Bob punched someone, but maybe it's not true", so I do understand why Charles isn't happy to see these accusations dredged up. I can't see the purpose of raising it in discussion either.
     
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  4. Esther12

    Esther12 Senior Member

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    Yeah sure, I can understand it. It can be difficult to talk about the power and impact of rumours without mentioning rumours though. One of the downsides of Charles' celebrity status!
     
  5. Aurator

    Aurator Senior Member

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    No, I don't wonder. You of all people are in a particularly uneviable position, mediating between, on the one hand, patients desperately hoping you can lead them to the promised land and, on the other, the wider medical community, with whom dialogue would be closed off for you once and for all if you didn't conduct yourself with professionalism and complete integrity at all times. Few of us, including myself, are probably aware of quite how fine the line is you have to tread. Personally I'm immensely grateful to you for your work on our behalf, especially given the fact that you have struggled with this illness yourself for many years.

    Nothing mitigates abuse or threats of violence from anyone. I have tried to understand why the feelings of ME patients run so high, why as a patient community we have earned a reputation in some quarters for being uniquely querulous, militant and "powerful". All I can find by way of an explanation is to say that across the whole spectrum of chronic illnesses, the experience of being an ME patient is probably uniquely traumatic, exasperating and productive of despair. The scepticism with which our illness is viewed in many quarters and the neglect and disdain patients endure every day destroys faith in our healthcare system like nothing else can, even in the case of people like me who have a long history of receiving excellent healthcare following injuries received in a road accident many years before.

    So I understand when your medical colleagues feel reluctant to get involved with this illness.

    But I would like to think that some at least of the reluctant ones do pause for a moment to reflect on whether there are perhaps compelling reasons why the field of ME has become so emotionally charged and potentially perilous even for the most well-meaning doctors brave enough to set foot in it. The answer, I suggest, is to be sought not in some peculiar mindset of ME patients, but in the immense gulf between the impact this illness has on patients' lives and the seriousness with which the illness is treated by our healthcare system, a gulf which I feel is wider than with any other illness. Patients have no control over the impact the illness has on their lives, they cannot do anything to narrow the gulf. It is only the healthcare system that can do that. Unless or until it takes serious steps to do so and invests in the research we all know is required, the entrenchment on both sides will persist and there will be little prospect of any change for the better.
     
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  6. Bob

    Bob

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    Personally, I have no doubt that a small minority of people within the ME/CFS community (whether patients or otherwise) have over-stepped the line, and caused aggravation and have abused researchers. It's been well documented that some people working within the field have reported being at the receiving end of abuse. (Not just psychiatrists, but people like Judy Mikovits and Charles Shepherd.)

    But, in terms of the excessive, exaggerated and disproportionate media reporting about death threats etc., this message purely comes from well known individuals within the psychiatric lobby and it is promoted/amplified by the Science Media Center. We know that the SMC have carried out an orchestrated campaign to highlight and promote these issues within the media. My opinion is that it serves the self-interests of the psychiatric lobby to do this, for a variety of reasons.
     
    Last edited: Jan 17, 2015
  7. Min

    Min Guest

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    Aurator says:

    Where is the evidence that anyone with myalgic encephalomyelitis has abused or threatened violence to any doctor or researcher please? No one with the illness has ever been prosecuted, no evidence of it has ever been produced.


    The constant unsubstantiated claims that it is happening are a particularly nasty way to denigrate a whole patient group, silence any criticism of the Wessely school of psychiatry and their useless fatigue clinics, and put anyone considering doing biomedical research off doing so.
     
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  8. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I think that it is partly a deliberate ploy to demonise a section of society, perhaps for political reasons.

    Many people would probably find it hard to believe that the same thing has been happening for a long time with animal rights activists, with the word 'activist' being almost inseparable in the public mind from 'extremist', 'terrorist', etc.

    As a typical animal rights activist, i.e. someone who believes that animals have rights, and who argues the case in a civilised way, in my case scientifically-based, and has never even been on an animal rights demo, I have in fact suffered something close to a death threat myself. In response to a reasonably-worded ad for a student society in a student magazine, I received a call from an aggressive man saying something like "Who the f*** do you think you are?" and then "People like you should be killed and tested."

    I was understandably somewhat alarmed, and reported it to the police. I had quite a job getting the rather unintelligent officer to understand that I was the animal rights activist and the offender was pro-animal experimentation - could almost see his brain whirring and rejecting this reported crime as not fitting his world view!

    (They did eventually trace and caution the man but never told me who he was.)
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    OTOH, Charles is now aware that such lies are online and can hopefully address the source in his particular case.
     
  10. Aurator

    Aurator Senior Member

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    I don't know, Min. I would be as interested as you are to see the evidence. Were specific allegations made to the police by the alleged recipients of the abuse/threats and these allegations investigated, or were the allegations merely relayed to the press and never followed up?
     
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  11. Sing

    Sing Senior Member

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    There are always individuals and groups who are demonized by a society. When you think of all the relatively harmless (meaning no more harmful than others) people who have been left out, on the fringe, outcast--then scapegoated or demonized--it comes to a very, very long list. As long as people are conformity, security and status-seeking, and believe in or pretend to believe in whatever their society and culture tellls them , this will go on. A person could obey every single law, and be a contributor to life and human society in all kinds of ways, yet still cross lines of expectation or acceptability somehow and become demonized and scapegoated.

    In our case we might not look sick in the short periods when we appear in public. Or we might be so sick or so withdrawn from years of disability that we are in a living death. Other people might wish to help, then fail, then reject and blame us as easier, more ego-protective for them, than seeing and hearing the truth--that this is a lifelong illness with no cure. These are all ways we are anomalous.

    The main thing for us is not to believe false attributions like this ourselves and not play into them. We need to know our own reality and express it accurately, no matter what opposition comes. We need to support each other and find support in our own group because there are many ways that we won't find it elsewhere. Without sufficient support there is a tendency to collusion, excessive self judgement and confusion. We need to strengthen ourselves so that we can be balanced both for our own lives and for this conflict. It is not a conflict we wanted or deserve but we have got it by virtue of being different, unusual, anomalous. Lots of people have been in the same shoes with us, and will continue to be.
     
    Last edited: Jan 17, 2015
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  12. Min

    Min Guest

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    The only person I have ever heard of being prosecuted for harassing an M.E. researcher did not have M.E.

    There appears to be no substance whatsoever all to the malicious allegations repeatedly made to the media of M.E. sufferers harassing researchers/doctors or sending them hate mail and death threats.
     
  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The ongoing media disinfo over ME CFS being your fault (using 4 year old failed psych research), is all about MONEY:

    Good people, do great things.
    Bad people, don't.
    Sick people, pick on the weak and vulnerable via propaganda in the press. History has taught us this.
    Good people can become bad.

    Once you recognize that all bullies are themselves weak, you have virtual power returned and you feel safer, because stress and reaction to stress can be controlled by rejecting the premise that you are to blame for something that is not your fault - e.g uncontrolled disease.

    The premise of 'fear' of exercise equates to ME or CFS is so funny. If only you 'stopped doing ME', you wouldn't have it.
    :rofl:.:lol: :woot:

    Powerful lobbyists require ME as CFS, they do NOT want you having ME associated to forthcoming serious novel infections because this then validates you being dangerously neglected in society and damaged (physical and mentally because of the twisted non evidence based psychiatric ideology) - the belief you have a belief, not a disease.

    With new found pathogens you can seek damages EASIER. Millions of dollars each potentially if you can prove multiple required factors for such a payout. They know too many compensation claims will roll in, the same-way as if you told people with HIV they have 'Gay Flu' (if they rarely died) and they just needed CBT/GE to get their life back, for 30 years. Gay Flu Yuppie Flu, same difference.
    BLAMING THE VICTIM, Get the public to think of them as second class citizens. Yes for AIDS (homophobia slur), Yes for ME (via psych CFS criteria).

    What the UK press is doing yet again, is victim shaming, collective punishment and against UK law and press standards. What will the GMC do when ME patients are on TV showing off their new infection on a lab record, with their Children and Autistic Grand Children also positive?! The GMC never stopped the doctors contacting the press to print propaganda. Why? Because no one in power felt the ME CFS patients were worth defending from people with a GMC license who are mentally ill - they view the victim's complaints as signs of dellusion. Hence all complaints are thrown out. Times will change as evidence mounts of neglect.

    The prime aim of anti ME propaganda is to remove ME from medical history so even the patients reject it. I'll repeat that, the prime aim is to remove ME from medical classification so even the patients reject it. For this to happen, the patients must themselves despise the name ME, and see it an a non starter. That is what propaganda does, it makes you reject self identity, it makes you self hate and self destruct. You want to be anything, but you, as you live in fear from the state. (Having ME CFS in school, thanks to the UK press, will make children mocked, teased and targeted as unworthy people). This has knock on effect on patients mental health, be they 10 or 35 and hearing their kids are getting taunted due to cruel press articles.

    The P2P/IOM is a get out clause. Once published, (but still heterogeneous ME CFS) they can claim the PATIENTS wanted this compromise, whatever 'this' is. Familiar hand picked 'patient advocates' are told to do this for the NIH. To back the P2P/IOM. The second that is sealed, the deed is done. No turning back. This is the new surrogate way to entrap ME sufferers within modern day CFS. Patient advocates risk sealing the fate of the whole community to make 2015 'genuine' ME/CFS (disingenuous Ramsay ME) heterogeneous. That itself, should be illegal. Patients aren't even medically qualified, never mind ME experts and remember the 50 real ME experts, were not allowed to take part in the Americana review of ME CFS. Now you know why.

    If this happens, ME cannot exist any longer, it cannot be researched and it cannot be referred to from hence forth the day this happens. ME becomes the past. NB: This has already been achieved with Gulf War Syndrome. Via the IOM the Americans successfully have stopped the act of serving your country in a war (and exposure to bio toxins) being associated to acquired disability (via the lobbyists), meaning the STATE IS NOT LEGALLY LIABLE FOR COMPENSATION PAYOUTS now you are crippled veteran with GWS. The lobby require an INFECTION never associated to the disease of ME - hence CDC created CFS in the first place in response to 'outbreaks' (clusters) and they then created a watered down CFS from that, which was a non organic disease (F48.0) used in the PACE trial and other papers.

    We know UK ME sufferers are maligned and targeted as 'evil, crazy people' in the UK press. Ignore it emotionally, but do save the Newspaper cut outs to give to your solicitor when you sue. I have, I collect them all. Date, referenced and how it affected me, what it made feel, and the affect the newspaper articles had on my family. (Family tensions, arguments, feelings of despair and hopelessness).

    With severe ME (long term), once you've got destructive Arthritis, Trigeminal Neuralgia and cancer from inflammation (never mind brain atrophy) you can't reverse it to get 100% fit. DNA damage occurs, you age at an accelerated level due to oxidative stress. Uncontrolled oxidative stress is dangerous to your brain and heart.


    Oxidised fat can clog up arteries, can lead to plaque rupture, and thus death. The arteries are clogged because your disease was ignored for so long, the oxidative injury was left. No anti-inflammatory drugs were developed for your novel form, of inflammation. (ME has this problem; ESR and CRP are largely useless markers). Other markers are needed, these could have been found, could have been developed, but weren't as no research money was available as it was re-directed into psychiatry to look at tired people without your condition, without your inflammation.

    This must be hilarious to the spiteful UK press at the moment, to bait ME CFS patients, but won't be the second the first patient sets a precedent and wins a case against the same journalists for consistent harassment and discrimination of a disabled group who are powerless to act, primarily, because they are too sick to work and can't afford a lawyer and they are cognitively impaired and can't neurologically launch a defense either. Not all though, some have money or can obtain it. Over confidence by the harassers in presuming ALL ME CFS sufferers are unable to mount an expertly crafted legal response to press driven hatred, will be their undoing. It just takes careful collection of research data, your own medical files, and a determination to stay focused in a crisis in which people are trying to goad you into an emotional response online or otherwise. (A common tactic used by any protected bully that they taunt and taunt and taunt - and get off on it).

    The press use of anti ME propaganda, is to make you not want to have ME and LEAVE the label for Good.

    If ME is a horrible label to have, you want another diagnosis label if offered one NOT associated to CFS? Yes.


    If you get a bunch of hack journalists using the media to cause upset and feelings of shame and embarrassment over ME, you will make these people desperate for a new label and the second this opportunity arises (Novel pathogen) they go running to it. Correct? Yes. (The community of upset and furious 'I now have proof' ME patients are far more likely to go for proposed novel infection disease names because it's based on something undeniable in existing science, not a derogatory illness label). The lobbyists know this, they are highly capable sadists and must be respected due to the level of danger they can wield against you mentally.

    ONCE YOU LEAVE ME CFS, YOU CANNOT SUE THE POWERFUL LOBBY AS EASILY BECAUSE YOU NEVER HAD ME CFS if Pathogen 'x' s associated to a NEW LABEL just for you, how kind. YOU NOW HAVE THE 'NEW INFECTION THAT WAS ONLY 'JUST' DISCOVERED. Who benefits from you leaving ME or CFS diagnosis if you are proven infected with a new pathogen, leaving ME CFS to psychiatrists and 'psychoneuroimmune illness'?


    That my friends, is called a Get of Jail Free Card!
    Timing....is everything. Press releases are timed with perfection for a reason, and notice all at once, in multiple papers, re-hashing the same story. Well worn tactics that takes an organised campaign of harassment against the patient community. The lobbyists are beautifully networked, it all takes organisation. I praise them for that, for the beliefs and dedication to the cause of denying ME exists, in people who haven't even kissed a boy yet, who got sick at 12 and are now 42 and STILL aren't depressed. The problem is then, the patients are even stronger than a whole legion of healthy, well paid, determined lobbyists. The patients are incredible, after all these years, they still keep going, still. That's why despite our differences, at the end of the day, we should love each other as fellow battle weary survivors, moderately affected or severe. We've all been screwed over, but never falter. Ever.

    This means now you are at the start of finding out why you are ill, you can ignore the mice that roar and despite you being a mouse (physically) you have a Lion's heart to have gotten this far, mentally intact. Incredible and I salute you all.

    So when you can, try and ignore the hatred, big breath in and out and await the paper (s) that are coming out from here on-wards. When you find out, it'll make sense how this all happened, why, and why you must try and stay calm as possible to protect your health by not rising to antagonism and bigotry in the press.

    You are you, not the person said to be you, by those who want to manipulate and exploit and weaken your resolve via stress - they know stress relapses your condition and makes you less able to protest injustices. Don't let bigots into your mind, just be aware for the reasons for their hysteria and blatant end game tactics (trying to cover up fraud).

    Remain assured, good people are going to help us and indeed, are. Quality science changes everything in medicine, which is why they don't want the correct cohort of patients, Ramsay ME! Thankfully it is taking place, as we speak, albeit in small studies. And it will get published in due course, and it will be a game changer once the process is proven. But this takes time. Years, a slow process.

    Laugh at the bullies. Bullies are weak people, lost within their own misery, who crave attention.
    Picking on highly disabled, socially neglected, symptom drenched, disbelieved lonely people is easy pickings for a sociopath, which is why they created this character you were forced to live as due to uncontrolled disease, via CFS.

    Without CFS, none of this was possible. You would have been researched and treated in the 1980's.
    You know it, they know it. The CDC know it. The CDC created it and others, exploited it.
    Science over comes all of this, once it begins with large scale double blinded placebo controlled drug trials.

    All of the nightmare will be a bad memory, the past, not the present. :hug:
     
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  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I fear that I don't share your confidence about prosecutions, @Research 1st. The media can just say they were using info provided by 'experts'. The doctors can just say that they were following their own guidelines. Those who write the guidelines...not sure about them, but who would you single out? Who is responsible for the collective decisions? Who is supposed to have the scientific understanding? Then whose responsibility is it to hire people who have such understanding, or to train them?

    Scientists may get prosecuted for fraud. That would be a good start, but probably hard to prove.

    I can hear Wessely and White shredding their raw data as I write...
     
  15. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    As I've said elsewhere, in UK, those in power have mass raped kids and it seems murdered those who tried to expose it (see police investigations, it's serious), and that was silenced for decades.
    Military researchers maimed and killed service folk with nerve gas tests and got away with it
    Thousands of people, mostly women, were wrongly diagnosed as "hysterics" for having Multiple Sclerosis or Type 2 diabetes and locked up in psychiatric wards or made to take drugs that harmed them
    etc etc
    I could go on at very great length.
    The UK is one of the most disgusting "cover up" systems there is.
    Because the majority of British people believe strongly in humane ways, those in power have went ever further in means to hide their evils.
    With a murderous dictator you pretty much know what you are going to get, but our system is vilely hypocritical.


    Although we have ways and means to get info out nowadays that once got folk laughed at as "conspiracy theorists", the media while once limited by the State is now part of a huge vile stinking network of nepotism and corruption.
    Go read up about the "D Notice", it was NEVER about national security, because telling 3000 publishers etc what NOT to print or talk about damn well guaranteed hostile nation's agents would know about it!
    It was all about silencing internal dissent!
    There is a legitimate use for it (mostly to do with court cases actually, not military security), but the State, or rather "the system" abused hell out of it.

    Murdoch's son was given a nice seat on GlaxoSmithKline, and Murdoch's group owned around $300 million of GSk shares at that time.
    So, do you think that may affect the media group's attitudes to publish the truth, whatever that maybe, in regards to vaccines, drugs or any issue regarding GSK and it's products?
    And that is a pretty common thing, you find a huge web of interconnection in power, wealth and privilege, and that is dangerous for the entire society.
    You don't even need malign deeds for it to result in harm, merely that certain things are "trouble" and thus "squelched". A big company can cause harm by removing funding to charities/universities, powerful people can suggest that a certain course of investigation may be troublesome, etc.

    The Soviet Union's control of the populace by perception, media manipulation is laughably childish compared to what goes in now in the West.
    Snowden's revelations were just the tip of the iceberg.

    it's not "Dr Evil & The Illumnati Ruling the World!" :D, no! just huge web of powerful groups and individuals, often pulling in different directions, but with lots of power and wealth, so they silence, bury, make a laughing stock etc of any "problems"
    or rather, their underlings do such things, sometimes without their bosses knowing or even wanting such things to happen.

    M.E. can it seems be triggered by some adverse vaccine reactions, and to pesticide poisoning by OP chemicals, or rather...there's a bunch of similar illnesses, that seem to have similar triggers: M.E., Fibromyalgia, Gulf War Syndrome, Aerotoxic Syndrome, after effects of pesticide poisoning etc
    this threatens powerful people/money so it is likely to be "silenced"

    It threatens insurance companies, some of those companies are so greedy they defrauded people who were seriously ill or dying out of their dues and resulted in deaths (fraud is fact, as court cases proved)

    That IS the way the world really works: "dirty deeds done dirt cheap"
    but there are so many of these, adding up, in complex ways, they are threatening the very existence of our civilization, possibly our species.
    Failure to research and treat M.E. is just one part of the huge mess we are building for ourselves as societies and a species

    It is NOT a joke.
    "Many a mickle makes a muckle"
    The proverbial "Butterfly Effect", nations, civilizations and species can fall by the consequence of many small things adding up.
    Thus, beyond the Humanitarian issues, it's just plain good sense to deal with these things rather than cover them up. But true common sense is not in the lexicon of the sociopaths and self obsessed gits who run things. it's all about short term power gain for the individual or group, at any cost.
     
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  16. Aurator

    Aurator Senior Member

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    I'm afraid it might turn out to be almost impossible to mount a successful prosecution against the psychiatrists. They would claim they acted in good faith, in what they sincerely felt to be the best interests of the patient, that their data were conscientiously obtained and similarly applied. I doubt the truth would ever get out in a court of law. Probably the worst they will suffer is to see their stranglehold on the treatment of ME removed and their professedly well-intentioned theories about psychological causation quietly rusticated.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I fear that you are right.
     
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  18. akrasia

    akrasia Senior Member

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    Charles Shepherd wrote:

    Well, I've actually given this some thought. ;)

    What is obvious to me is that it has nothing do with blaming patients for the failures of medicine, medical policy, and the poor journalism that sycophantically promotes these views.

    Did patients have anything do with the drafting of the Oxford definition? Or any of the deficient definitions promoted by the CDC? Or grossly underfunding research? Or the domination of medical textbooks by the BPS clique. Or the rise and "triumph" of a particularly stupid and destructive form of CBT practiced by liason psychiatry? Or the career death that studying M.E. meant to ambitious young doctors, either in clinical medicine or in research? Did patients urge Stephen Strauss, our "benefactor" at the NIH and Kenji Fukuda to collude in trying to make the discrete entity of M.E. disappear? Or influence the rejection of Ian Lipkin's application to study the microbiome at the NIH because the 3 person special emphasis panel contained two morons, one who was sure that the M.E. was due to a herpes virus, and the other who asserted that "everyone" knows that M.E. is psychological? Why were these 2 on the panel at all?

    Mary Dimmock, in a review of the last CFSAC meeting, suggested that in order to redress decades of neglect, injustice, and propogation of stigma, that there be a special initiative funded to correspond to the numbers of people sick with M.E. including outreach to the very academic institutions that turned their backs on us. By the way, a very good account of just what that looked like in the late 80's when M.E. was just emerging into the public awareness can be found in Oslers Web. This was way before the internet and patient activism.

    I've appreciated Charles Shepherd's consistent response to the sort of bilge we've seen in the last week. I was taken aback by this statement which suggests that he holds patients in contempt and identifies with the very people whose abrogation of responsibility has landed us in this mess.
     
  19. Bob

    Bob

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    Oh, come on, he was responding to a specific and serious allegation. Charles is human, and has feelings. How would you feel if someone posted such an allegation about you on the forum? You'd be upset, right? And you'd either complain or leave the forum. Put yourself in his situation - he works flat out to assist our community - with little reward or thanks - and then gets those sorts of allegations hurled at him. I'm not surprised he spoke out.

    This really doesn't need saying but, personally, I've only ever found Charles to be helpful, polite and professional. I don't know him well, but I'll judge him on his actions, and not on a single (understandable) comment said in the heat of the moment. The rest of us never say things on this forum in the heat of the moment, do we?
     
    Last edited: Jan 18, 2015
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  20. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I hope he gets the root of the allegation sorted out.

    To be honest, I thought that it might have been a heroic act in defence of patients, although I don't know why one would need to defend them against Byron Hyde!

    I guess it was either a malicious fabrication or an error. Either way, the two of us who quoted it were innocent bystanders and not the source of the wrongdoing.
     

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