1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Is there some crazy conspiratory going on to make ME/CFSers look bad?

Discussion in 'General ME/CFS News' started by taniaaust1, Nov 11, 2011.

  1. fla

    fla Senior Member

    Messages:
    234
    Likes:
    38
    Montreal, Canada
    It's all about what makes the best business case. No treatments meant no money to be made by pharmaceutical companies and lots of disability costs to insurance companies. Creating CFS as a wastebasket diagnosis was a good business case for insurance companies so they got the CDC to execute their best business case at the time.

    The Norway study is a game changer. If pharmaceutical companies can treat us with expensive drugs for years, they suddenly have a business case. For insurance companies, getting some sick people well and back to work is a good business case. For the subgroup of patients who do not respond to treatment, there is still a need for a wastebasket diagnosis so reclassifying CFS into two classifications would allow for a group who responds to treatments and a wastebasket diagnosis for those who don't.

    I hope some insurance companies lose enough money in lawsuits so that they begin to see the business case of selling insurance for M.E. You can pretend that floods don't exist because they cost you too much when they occur (and get sued and lose) or you can sell profitable flood insurance. Make it clear that M.E. coverage is an option on health insurance coverage and calculate the costs of that option just like with any other risk.
    Min likes this.
  2. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    Being sick, no matter how sick you are, doesn't excuse you from being civil.

    My prior work involved dealing with sick people with all sorts of illnesses. Occasionally, someone would get angry with me or the nurse or the social worker and we would get yelled at, called names, etc.; oftentimes, it would be about something out of our control and people just saw us as a convenient "punching bag" for their emotions. Our response to yelling patients? "I'm sorry but I can't understand you if you continue to act in this manner." If they didn't calm down, we'd walk out on them. Now, nine out of ten times, the person would come back and apologize for their behavior, we would accept their apology, and things would go on as before. So I can see people getting upset occasionally and it's fine if they make it up with the person or group but continuous behavior of this type is should not be tolerated.

    I understand that people might hold different points of views on the forums but that can be discussed civilly and not by harassing the same person over and over again that has already said they disagreed with a point of view. Fortunately, this has not happened to me and I could care less about these types of folks but I do see and read the detrimental effects of such behaviors on others. We know that people have committed suicide or harm themselves because of verbal harassment on Facebook. This doesn't even count the people who may develop or have exacerbations of anxiety/ depression/ etc.

    I don't know if this is the type of behavior the first post is referring to but those folks who harassed others in this way need to think long and hard about how they would feel if this type of behavior was visited on them.
    Kina, justinreilly, Nielk and 3 others like this.
  3. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Perhaps then, Leena, you perhaps might understand if I tell you that I was a key member of One Click in the past.

    But 'snowathlete' will be aware of that - my name is all over the history of One Click (as opposed to their recent campaigning). 'Interesting' that the same person attacking me in this thread and others should be attacking a group as 'baddies' that I once belonged to.

    Just be aware people, be aware.
    Wildcat likes this.
  4. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,079
    Likes:
    1,582
    Somewhere near Glasgow, Scotland
    Mark
    yup!

    Either what has happened ot us is:
    gross criminal negligence from lunatic bigotry and "false scientific beliefs" (hehe hoist by their own petard). That's "Psychobabble"
    or
    deliberate denial of health treatment to save insurance companies/government from paying disability etc
    both ARE serious crimes, last one is mass murder if they knew the illness was lethal.

    Folk are entitled to their opinion, but if it looks like a turd, feels like a turd, smells like a turd, then it IS a turd! :p (ie what ME patients have been put through is deliberate pile of evil crap)


    A picture is worth a thousand words...and a video is worth a few billion then! ;)

    [video=youtube;OJmis85FM4s]http://www.youtube.com/watch?v=OJmis85FM4s[/video]
    Wildcat likes this.
  5. snowathlete

    snowathlete

    Messages:
    2,049
    Likes:
    2,159
    UK
    Moderator: Removed inflammatory comment continuing personal argument with another member

    SilverbladeTE, that video just leaves me speechless. I can barely believe it. Is there more to this story? Surely the parents have taken legal action? It goes way beyong conflicting medical opinion, even with people who do have pyschological problems, you cant just dump them in water and see what happens. It reminds me of witch finders putting 'witches' in water to see if they sunk or swam. Its criminal.
  6. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    Hey Mr Cornholiooooo???? Funny way to put it, but it does come down to that.
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,079
    Likes:
    1,582
    Somewhere near Glasgow, Scotland
    Soowathlete, mark
    yeah, I posted that to PROVE, to blow out of the water this wrong notion that what has happened to the ME patients, is acceptable norms, a simple accident at worst...no, it's evil bigotry, ignorant, hateful, unscientific, mysogynistic arrogant abuse
    /rant mode off, lol! :D

    they are untermensch, theyare weak, they are whiners, so ignore them, let them suffer, it's all in their heads!
    that is the attitude and belief of these smug, arrogant ratbags, and as I've said, I've suffered at their hands as well, so I know this is true.
    Just because somone has a medical licence, or a PhD etc doesn't mean they are a decent, sane, logical or have any damn respect for others or understanding of science :/
    A psychopath could make a good surgeon or engineer, bloody atrocious diagnostician or researcher, though, as something to consider.

    First 2 GPs I know for a fact didn't believe ME was real at all (they said as such to several people who then told me including my Mum, grrr)
    Consultant who saw me after I got worse ignored blood tests and MRI scans, leaving me to rot with zero testosterone for 3 years, I saw the contemptous look on his face, he couldn't be bothered dealing with me...his colleague who reviewed my case years later and thus over turned the prior idiot's screw up said and I quote "He should have stuck to rattling test tubes, he knows nothing!"

    and of course there's much worse out there, including deaths, child abduction, locking sane suffering folk up in mental wards, and torture.
    Anyone else did that society would be so outraged they'd have armed police or worse jump all over 'em, think about it a minute.


    Again, some of the posters who think this isn't a terrible crime, have right to their opinion. But my opinion is, they're very wrong.


    As for "conspiracies", today it was revealed the News of the World phone hacking outrage got even worse, it seems they used private eyes to investigate the members of the earlier parliamentary group investigating this...and we also know they snooped on the laywers working on behalf of the victims, added in with intercepting communiques from Cabinet Ministers, well, that's adding perverting the course of justice to charges of treason and espionage if prosecutors wish to bring those up (fact)
    So do not tell me conspiracies do not exist, ESPECIALLY when power and money are involved!.
    I love history, it's full of proof they occur and indeed are alas, part of Human "norms".
    Anyone who believes conspiracies do not exist, are more barking mad than those who think there's a giant hole in the Antarctic filled with Nazi UFOs or other such extreme/silly conspiracy theories ;)


    and heck those crazier conspiracy theories are fun actually when folk turn 'em into things like this, hehe
    amateur scifi fans made spoof film of Star Trek, so after that they got huge interest, the'yve been working on this newer project for a few years, it's a spoof in case folk don't get it :p
    you gotta laugh at life or you would go mad! :D
    And the worst kind of madness is when you think your "beliefs" are so important they excuse mass murder and abuse...history is full of such, and thew witch finder and Nazi horrors are indeed, directly applicable to this. Those were not some different species, they were *us*, fellow Humans, exactly the same who let their fears/ego overule their compassion

    [video=youtube;DeAfoiN5SDw]http://www.youtube.com/watch?v=DeAfoiN5SDw&feature=player_embedded[/video]

    fair looking forward to that film, lol
    yes posting that may fit in with the "ME patients are mad!" idea
    SO WHAT THE HELL?! we're untermensch, ignored and left to die off as it is anyway, shmucks don't give a damn about us, we aren't going to change that.
    Be Human, don't be aquiescent, lickspittle non-entities!


    oh and as I've repeatedly said, ME is a neurological disease, syphilis, Lyme Disease and Rabies are all very well know to cause abberant behaviour, irritability even violence because of the damage and pain they cause to the brain itself. Also, diabetes (low blood sugar)
    since I've had meningitis and suffered low blood sugar, I can attest to some definite similarities but also lot more differences (closer to low blood sugar than meningitis, imho)



    anyway, some folk are civilized, calm and have led quiet, decent lives. such folk often can't see the evil that men do as they ain't used to it. Frustrating but not their fault, pity more weren't so so blessedly naive (not actually getting at such folks, more wistful and sad)
    some of us have not been so blessed and are alas, better at detecting Homo Cariosus Illegitimii at work :p
    justinreilly likes this.
  8. Wildcat

    Wildcat Senior Member

    Messages:
    676
    Likes:
    658
    '@ SilverbladeTE, that video just leaves me speechless. I can barely believe it. Is there more to this story? Surely the parents have taken legal action? It goes way beyong conflicting medical opinion, even with people who do have pyschological problems, you cant just dump them in water and see what happens. It reminds me of witch finders putting 'witches' in water to see if they sunk or swam. Its criminal.




    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    @ snowathlete and silverblade:



    Yes, it is criminal, Silverblade and snowathlete, the persecution of children with ME in the UK, that did not stop in 1988!!:

    READ AND WEEP!!





    The Tymes Trust UK ME Childrens Charity Tweets about ME Children Child Protection, July 12 2011

    Tweet from Jane Colby, Director of the Tymes Trust ME Childrens charity:
    Jane Colby: Another Child Protection case Today. Had 68 recent ones - 100% innocence. Will pursue this injustice. Reviewing older cases


    TYMES Trust and AYME presented jointly on the issue of child protection at the last APPG on ME meeting, 22nd June 2011.

    http://www.meassociation.org.uk/?p=6724




    The Briefing Paper regarding child protection issues is available here:

    http://www.meassociation.org.uk/wp-...PROVED-APPG-brief-child-protection-2011-2.doc

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~





    The Tymes Trust childrens ME charity works with educating schools and social services about ME as well as informing and supporting children and families... there is a helpline, but as always resources are thin in the ground. The problems often start with school absence..... and then can escalate into wrongful official investigations..... Educating schools teachers, social workers and medical professionals


    Child Protection Issues:
    A Presentation to the All Party Parliamentary Group on ME (2008)
    http://www.tymestrust.org/pdfs/childprotectionissues.pdf

    Jane Colby
    Former Headteacher
    Executive Director, Tymes Trust

    Joanna Smith recommendations,
    misunderstandings over parental or carer influence, and the personal
    experiences of a parent of a Tymes Trust member. Welfare Rights Advisor, Brunel University

    The Young ME Sufferers Trust
    Registered Charity 1080985
    Founder Patron : Lord Clement-Jones CBE

    Abstract
    On 2nd July 2008, Jane Colby and Joanna Smith gave presentations by
    invitation of the All Party Parliamentary Group on ME on Child Protection
    Issues, covering Child Protection procedures and





    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




    #Tymes Trust Scotland Blog
    Parents of sick children living in fear. Newsnet Scotland. 20th January 2011

    Watching a child suffer every day at the hands of a chronic, disabling illness is heartbreaking for any parent. Imagine then, what its like to be blamed for your childs illness and threatened with social services.

    This is the reality for many families caring for a child suffering from myalgic encephalomyelitis, known as ME or chronic fatigue syndrome. In fact, the number of parents in the UK being threatened by doctors who say they will report families to child protection agencies has doubled in the last year.


    ..Children face difficulties in diagnosis, present with a range of complex symptoms and are isolated from school life and friends. The first ever biomedical research into ME in children published last year by the University of Dundee concluded that the physical symptoms of ME in children can be just as disabling as multiple sclerosis. The childs quality of life is considerably worse.



    Jane Colby from the Young ME Sufferers Trust (TYMES), a former head teacher, said misconceptions about the illness in education and primary health care must be addressed.

    Professionals often think of it as a psychological problem, prescribe the wrong treatments and make the child worse. Then families are accused of causing the damage, its ghastly. We made clear recommendations for social services to be alerted by the Government many years ago but so far no action has been taken.
    Min and justinreilly like this.
  9. Wildcat

    Wildcat Senior Member

    Messages:
    676
    Likes:
    658
    The Forgotten Children A Dossier of Shame.

    Tymes Trust ME Childrens Charity Report 2003:
    http://www.tymestrust.org/pdfs/theforgottenchildren.pdf





    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    www.tymestrust.org/pdfs/metheillness.pdf


    http://www.tymestrust.org/pdfs/ourneedsourlives.pdf



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




    From the ME Association site:
    The Royal College of Paediatrics and Child just this year made a statement made in the recent mini-review of the NICE Guideline on ME/CFS that ME/CFS is a psychological illness with physical manifestations with clinical experience suggesting that the incidence appears to be falling in children and young people.


    After intervention by the Countess of Mar the Royal College retracted its earlier statement in the NICE Guidelines mini-review.

    In a letter sent to the Countess of Mar on 21 April, Cambridgeshire paediatrician Dr David Vickers a member of the Royal Colleges Presidents Advisory Group writes:

    I have reviewed our submission to the NICE consultation and can confirm this comment was from one individual who assisted in our response. As such it does not represent RCPCH policy, and in retrospect should not have been included. The phrase as a psychological illness with physical manifestations was unhelpful.



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    The 1999 Panorama Survey and programme in conjunction with the Tymes Trust
    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    ME children treated as mentally ill

    Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

    However, doctors are divided on how it should be treated and many do not accept that it exists.

    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
    Some who had opposed psychological treatment for their children had been threatened with having them taken into care.

    <Snip>


    NB: 60% of 25,000 = 15,000. Please bear in mind the figure 25,000 is a 1999 figure. New cases of ME/CFS are diagnosed every week.



    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill


    The producer of this program stated that they were overwhelmed with the number of families who contacted the programme maker before the programme was made, but obviously could only use two or three cases in the programme, but that doesnt mean there were only two or three cases of very inappropriate psychiatric treatment of children with ME.



    TRANSCRIPT - PANORAMA "SICK AND TIRED"

    http://news.bbc.co.uk/hi/english/st.../panorama/transcripts/transcript_08_11_99.txt



    MATTHEW HILL
    A child is taken to a locked psychiatric ward against his parents' wishes.

    DOCTOR FRANKLIN
    Why go to those extreme and draconian measures? It's horrendous.

    M.HILL
    Doctors divided over the best way to treat children with chronic fatigue syndrome.

    GEORGIE SHELDON
    M.E. SUFFERER
    I came out a hundred times worse.

    M.HILL
    Tonight on Panorama: "Sick and Tired" - the families caught up in a medical dispute.

    Georgie Sheldon developed a brain tumour when she was ten years old. It was removed at one of the county's leading children's hospitals - Great Ormond Street. Although her cancer was cured, her recovery didn't go the way her doctors expected. After a series of viruses,

    Georgie developed an illness called M.E., or chronic fatigue syndrome.

    Continues..


    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~




    The 1999 Panorama Investigation Sick and Tired

    http://news.bbc.co.uk/1/hi/health/509670.stm

    ME children treated as mentally ill

    Children suffering from chronic fatigue syndrome (CFS) are being pressurised into having psychological treatment which may not be appropriate, according to a BBC survey.

    Some 25,000 children in the UK are estimated to be suffered from the syndrome, also known as M.E. (myalgic encephalomyelitis), and it is recognised by the Department of Health.

    However, doctors are divided on how it should be treated and many do not accept that it exists.
    An exclusive survey for the BBC's Panorama programme found that 60% of families of children with CFS were told their symptoms were a result of psychological problems.

    In a disproportionate number of cases, doctors had suggested that the children's parents had Munchausen's Syndrome by Proxy - a condition which causes parents to harm or fake symptoms of illness in their children in order to gain attention.
    Some who had opposed psychological treatment for their children had been threatened with having them taken into care.

    <Snip>
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,169
    NYC (& RI)
    I agree. Sorry I misunderstood. Thanks for speaking out!
  11. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    Moderator: Continuation of argument removed - off-topic.
    Min and Wildcat like this.
  12. snowathlete

    snowathlete

    Messages:
    2,049
    Likes:
    2,159
    UK
    Moderator: Continuation of argument removed - off-topic.

    UNHELPFUL! understatement of the century!

    Wildcat - thanks for all that inforamtion you posted. The Panorama stuff in 99, do you know who helped to get that program to happen and whether anyone is pushing for a second program to be made?

    I often find European law frustrating, but hasnt anyone taken these cases to court on the back of the European childrens rights?
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,865
    Likes:
    4,772
    Sth Australia
    Please peoples stick to the topic.. I want a sincere discussion, I truely didnt want any waring in the thread between members as it wasnt about any individuals "with" ME/CFS.
    Ive asked mod to remove off a negative off topic post and will probably get others removed for same reason.

    Please help make this forum a nice place and like a supportive family. We have more important battles to be fighting.
    anne_likes_red likes this.
  14. Wildcat

    Wildcat Senior Member

    Messages:
    676
    Likes:
    658
    Hi snowathlete,

    I'm glad that you found my posted info informative and useful.

    I find it very frustrating, that everytime that I have stated on forums about the abuse of children with ME by officials, that someone or other then posts to say that they think there may be the odd case but that its not a great problem. I then have to work to locate referenced evidence to prove that there is STILL an actual epidemic of unlawful Munchausands/child protection investigations of families of children with ME. And no, there are no plans for a follow-up Panorama programme. The BBC reports on ME of the last few years support the Wessely School agenda.


    It grieves me to see you at loggerheads with Angela on this forum. The only reason that Angela is engaged in ME activism is because her daughter has ME. Angela has brought a level of intellectual/academic rigorousness to ME activism that is sorely needed. OK, not everyone will agree with her posts - but that is par for the course where activists are 'ahead of the game' in their analysis. I have been 'beaten up' more times than I care to recall for sticking my neck out and speaking out on subjects 'ahead of the game'... and later proved right.... its tough, but informed activists stick with it.
    Min and Angela Kennedy like this.
  15. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    thanks for all those links on the children wildcat. Haven't read them all, but looked at a bit. Pretty scary situation.
    Wildcat likes this.
  16. snowathlete

    snowathlete

    Messages:
    2,049
    Likes:
    2,159
    UK
    I'll take a look at tymestrust, I hadnt heard of them before, but it sounds like they are one of the only groups trying to do something about it. Though with 68 cases without any sucsess,i suspect that shows how difficult they are finding it to achieve any justice. I dont imagine its an easy task.
    Pretty depressing really. I want to say, "we should do this, or that" but im not sure what i can come up with.

    I admire people that are willing to campaign. I guess its a case of different people, different approaches.

    taniaaust1, I understand you dont want a war on here, I agree and I hope we can avoid that.
    I just want to check though, are you happy with the fact the topic has moved onto health system child abuse in the last page or two, or would you like us to move that topic to another new thread, and return this thread to the titled topic?

    Best
    Joel
    Wildcat likes this.
  17. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,079
    Likes:
    1,582
    Somewhere near Glasgow, Scotland
    Wildcat
    alas that video shows the attitudes of about 1/3rd of the physicians in the UK :/
    (maybe less now, as the older ones who tend more often to be the scumbags, are retiring etc due to age, replacing with younger, more critically thinking physicians)
    Wildcat likes this.
  18. Wildcat

    Wildcat Senior Member

    Messages:
    676
    Likes:
    658
    .

    Snowathlete Wrote: "I admire people that are willing to campaign. I guess its a case of different people, different approaches."





    Well said, snowathlete! It does take all sorts to make sense of this dire, atrocious, ME political situation.

    God help us, and I do hope that we will all get the valid diagnoses and treatment that we need.

    In the meantime - it is the outspoken, highly informed, dissidents who hold the fort!
  19. allyann

    allyann Senior Member

    Messages:
    247
    Likes:
    173
    Melbourne Australia
    I agree too, but I personally think there are places where advocacy is relevant. Most of us have limited energy and spending it fighting amongst ourselves is not helpful. It would be better to encourage others to advocate outside the forum than attack those inside for not following your point of view.
    Wildcat and anne_likes_red like this.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,865
    Likes:
    4,772
    Sth Australia
    I dont mind talk of the child abuse which goes on around ME/CFS at all, Its still happening far too much and people should know this is happening. The Tymes Trust has been around for a very long time and has worked hard to try to make things right for those with ME.
    Im surprised to hear people say they havent heard of them (but I guess we nowdays dont hear much about Tymes Trust as we used to do. Come to think of it I havent heard their name come up for a couple of years myself) . ..

    its just nastiness directed against specific individuals on the site which bothers me, which Im really asking people to stop doing here. I do not want my thread locked due to the abusive nature of others and its just not pleasant and stressful for people.

See more popular forum discussions.

Share This Page