The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

An Urgent Question

Discussion in 'General ME/CFS Discussion' started by mirespada, Sep 7, 2018.

  1. mirespada

    mirespada

    Messages:
    13
    Likes:
    46
    My friend in New York (I live in Oregon) and I connected on a pen pal site because we both have severe ME and are unable to socialize in person, so instead exchange e-mail and texts with each other. His parents, unlike mine, are completely unsupportive of his disability and don't believe he is really sick. He has already been sent to a psych ward once and they made him exercise until he was unable to walk anymore, even to go to the bathroom by himself. They refused to feed him unless he got up and went to the cafeteria himself, which was impossible since the exercise made him incapable of getting out of bed. He was finally let out of that place after months of "therapy" to "stop his self-harming beliefs that he was sick".

    Now, his parents are going through the steps to have him forcibly admitted once again!!! He has no one to turn to who can help him out of his situation and is trapped into going back to the psych ward for another torture session, without any way to stop it. So, here is my question to anyone who knows: are there any resources out there that can help my friend?
     
    AnnaDove, Joh, ScottTriGuy and 7 others like this.
  2. Chelby

    Chelby

    Messages:
    57
    Likes:
    87
    I wish I could be of more assistance, what about a patient advocate?
     
    Mel9 likes this.
  3. boombachi

    boombachi Senior Member

    Messages:
    320
    Likes:
    1,102
    Hampshire, UK
    It is so distressing to hear that your friend is in this situation. I don't know the american mental health legislation but below is a link to an organisation in new york that should be able to advise further. You also don't say how old your friend is. In the uk there is a system in place where everyone committed must have an advocate and can appeal the decision in court.

    http://www.drny.org

    Or would the statement from a UK charity carry any weight with his parents. There is similar i formation on the ME Association website.

    https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/

    Could he ask his parents to check the Centre for Disease Control website which no longer advises behavioural treatments for cfs.

    Could your friend ask his parents to see another primary care advisor for a second opinion. There must be enough people on PR who could recommend a good me/cfs doctor in New York.

    Your friend is lucky to have your support and friendship during this difficult time.
     
    percyval577 likes this.
  4. Mel9

    Mel9 Senior Member

    Messages:
    678
    Likes:
    1,692
    NSW Australia
    How awful for him! I’m glad he has you for a friend.
     
  5. Eastman

    Eastman Senior Member

    Messages:
    457
    Likes:
    429
  6. mirespada

    mirespada

    Messages:
    13
    Likes:
    46
    Thank you for all your wonderful suggestions. I will definitely pass them onto him when I talk to him next.

    Unfortunately for him, he has shown his parents all the documentaries (Voices in the Dark, Unrest, Forgotten Plague) and I have sent him plenty of articles from prominent sources (The CDC's 2015 report, the Nancy Klimas report on immune response in ME/CFS patients, articles refuting the graded exercise and cognitive therapy programs, the Stanford brain scans, etc.) and they read them but don't believe that is what is wrong with him. They accuse him of Medical Student Syndrome and that his "CFS friends" are influencing him by encouraging his delusions.

    There are many neurologists and psychologists in his family that whisper in his parents' ears and tell them it is a psychological problem and it is all in his head. His family even staged an "intervention", which consisted of all of them going to his room, pulling open his curtains, and yelling at him that he is lazy and needs to get on with his life.

    His situation is the very worse of what could happen to those with ME/CFS. It is so frustrating to watch him struggle against his parents. He spends every day trying to prove he is sick and begging for the things he needs to take care of himself. I hope that some of this information can help him get out of this situation. I even suggested he contact the domestic abuse organization and ask what he can do to get out.
     
    AnnaDove, Chelby, Thinktank and 4 others like this.
  7. percyval577

    percyval577 Senior Member

    Messages:
    210
    Likes:
    125
    I can only mention my long term improvement from a diet (but it´s not all easy as well). In between I was by accident and accordingly quite well too. I reduce manganese, fat and sugar. I have made threads on that.
     
  8. boombachi

    boombachi Senior Member

    Messages:
    320
    Likes:
    1,102
    Hampshire, UK
    The medical profession should be protecting your friend. He sounds very vulnerable. I hope maybe the disability rights organisation can advocate for him.
     
    Mel9 and Lisa108 like this.
  9. Art Vandelay

    Art Vandelay Senior Member

    Messages:
    341
    Likes:
    1,511
    Adelaide, Australia
    Given that your friend is in New York, maybe these two items can help?The New York Health Commissioner and the Health Department have both strongly advised against graded exercise for ME/CFS.

    (there's a copy of the letter at the link above)


    Also the New York Dept of Health webpage on ME/CFS was recently updated with this:

    https://www.health.ny.gov/diseases/conditions/me-cfs/
     
    Last edited: Sep 8, 2018
  10. Carl

    Carl Senior Member

    Messages:
    177
    Likes:
    159
    United Kingdom
    It has already been asked and is important, what is his age?
     
  11. mirespada

    mirespada

    Messages:
    13
    Likes:
    46
    He is 28. I am sorry I haven't answered that!
     
  12. Wishful

    Wishful Senior Member

    Messages:
    818
    Likes:
    1,178
    If his parents won't accept scientific documentation, then it's necessary to get professional help, such as a patient's advocate or a doctor who accepts that ME/CFS is a real disorder. That person should have the training to convince the parents. ...and maybe he could go after those ignorant neurologists and psychologists too. :rolleyes:
     
    AnnaDove, Mel9 and Lisa108 like this.
  13. Hip

    Hip Senior Member

    Messages:
    10,911
    Likes:
    18,160
    I really wish that one day, one of these abhorrent psychologists who so insensitively force exercise upon sick ME/CFS patients — which is known to often worsen ME/CFS — will get prosecuted, and receive a custodial sentence. This form of abuse deserves a prison sentence.

    Good psychologists should have empathy, and be able to tune into the minds of the people they treat. Anyone with empathy would realize that ME/CFS is not due to mental state, but is clearly a physical disease. So for any psychologists to believe otherwise, it shows that they lack empathy, sensitivity and understanding, and should therefore not be working in that profession.


    I would suggest two things that may help:

    (1) If you can get the name of the psych ward that is treating your friend, and in particular the name of the psychologists or psychiatrists who are involved in this exercise treatment, we can create a thread about them on this forum, and we can collectively denounce the psych ward and the shrinks involved. No institution or individual wants to see bad publicity.

    This can be done anonymously, without any reference to your friend; we could just start a thread which explained that this hospital or institution used forced exercise, which can be a harmful treatment. We could even get more active, and contact the local police department, and register a complaint of patient abuse at this hospital.

    (2) If you can get some contact details of the parents, such as an email or phone, with the agreement of your friend, some people on this forum might like to write to the parents, and explain to them the reality of ME/CFS, and how it is a physical disease, not a condition that is caused by "a belief that you are ill".

    The emails can start of as polite, but become progressively harder.
     
    Last edited: Sep 8, 2018
    outdamnspot, Judee, Chelby and 2 others like this.
  14. mirespada

    mirespada

    Messages:
    13
    Likes:
    46
    My friend does not want to give any personal or location information about himself. He is in such a delicate situation right now and is in fear that if his parents catch wind he is seeking help, that it will just get worse. So, unfortunately, I am unable to say more than what I have said on here. I probably said too much actually!
     
    boombachi likes this.
  15. Wolfcub

    Wolfcub Senior Member

    Messages:
    366
    Likes:
    825
    SW UK
    If he is 28, then he is an adult. His parents are in the position of being his primary carers.
    If (as is obvious) he cannot support himself financially, then he may be entitled to benefits as a single adult. But obviously I don't know how that would work, or what the situation is when an adult lives with parents.
    He may even receive rent allowace to cover the cost of paying rent to his parents as he lives there? I don't know.
    He is not the prisoner of his parents. However much they may think he is.
    He has the right to choose what care he receives and from whom.
    He has the right to choose and contact health professionals, and "home helps" as he sees fit. And to have access to any mobility aids (which he may receive at low cost or even possibly free of charge? under an invalidity status)

    Changing and/or contacting health professionals, including primary care doctors, may be possible to do over the telephone. Ordering forms for financial disability support can also be done online or on the phone.
    I don't know obviously but would he be eligible for Social Security Disability Benefit?
    There is a page here about the criteria:
    https://www.disabilitysecrets.com/medicine-medication-prescription-drugs-chronic-fatigue.html
    But that might depend on how Social Security views his situation re: living arrangements (?)

    Anyway, the way I see it, first and foremost he needs to speak to a doctor who has experience with ME/CFS cases. Even if not a specialist at this point. If a specialist is required that could come after.
    He needs someone professional on his side -even a little bit right now.
    That is the most important thing right now. And as an adult he has a perfect right to do that and to change doctors if he wishes. He would have that right even IF he did have a mental illness!
    So I would think the first thing is to make contact with someone like that in the New York area.
    He has legal rights.
     
  16. Hip

    Hip Senior Member

    Messages:
    10,911
    Likes:
    18,160
    That is certainly the case, but once you get to the severe level of ME/CFS, you can be very vulnerable, and well as very weak and frail physically and mentally, so fighting an adverse situation can be very hard to do on your own.



    Do you know the legal basis for this? In the UK at least, medical professionals can forcibly make under 16s go to hospital, and of course you can be sectioned if you have severe mental health problems. Otherwise, as an adult, there is no legal basis for medical treatment to be forced on you.

    I'd like to know how at 28 years old he can be forcibly admitted by law.
     
    Moof, boombachi, Snow Leopard and 3 others like this.
  17. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,933
    Likes:
    10,196
    This situation is very distressing for your friend and for all of us who know that this is not a new or unique situation. Although it's not at all helpful he has my sympathies. This should not happen to anyone.

    From the above posts it sounds like his family will never be persuaded by anything reasonable. I fear in the short term there may not be any good solution.
    The more desperate we get the more it seems to reinforce others beliefs.

    I would suggest that your friend save his energy and stop trying to persuade them and start forming a plan for the future if he can. I have no idea how disabled he is (there is such a huge variation in symptoms and levels of functioning).

    I would also suggest that he, along with your help start thinking of the long term and what needs to be done. There are thousands of people with ME who have been giving what little energy they have left to advocating on behalf of all of us who are ill with ME for the changes that are needed to ensure that situations like this never have to happen to anyone again. One example would be (as posted in a link above) the New York State Health Commissioner's Letter. The NY gov't didn't wake up one day and decide to 'do something' about the situation of bad treatment of people with ME. It was a long process of interaction and advocacy.

    In the short term it may still be possible to effect some real change in your friend's situation. You can research by asking here and elsewhere where you might find a journalist in the NY area who might be sympathetic (be very careful here as some people will seem to be and then change the tone completely once they are left to write about it). They can write about the history of the problems with the old ME paradigm and highlight your friend's plight. This would make his situation more public and perhaps a little shaming of his families behaviour might be the only thing that might amend it. But I would count this as a long shot.

    The long term focus on advocacy may not seem like it relates directly to your friend's situation but it does. It just doesn't solve the problem today. There has been horrific treatment of people with ME for many decades. This is just now starting to change to the point where real tangible things are happening and the old paradigm is loosing it's grip. I couldn't possibly post all of the things people have done to evoke the changes that have happened so far. But I would stress to all the posters here who read this that it is only through our collective action to remove the harmful psychiatric paradigm that people like your friend will be safe from harm. This is not a very satisfying answer for the short term but it is the most (I think) effective unless your friend can dis-attach himself from his family.

    Please let him know that we are thinking of him and wish him a better situation. He is not completely alone.
     
  18. mirespada

    mirespada

    Messages:
    13
    Likes:
    46
    I really want to thank everyone who has taken the time to think of my friend and what they can do to help! It really has moved me to see how the community is reacting to his plight. I have been in constant contact with him these last few days and he is overwhelmed with happiness knowing that he has support and seeing that he has options to help him out of his situation. I can't thank everyone enough! THANK YOU! You have no idea how much you have helped him through this awful situation just by posting your support.
     
  19. Elvira81

    Elvira81

    Messages:
    29
    Likes:
    21
    OMG, his story is so terrible!
    He is so exposed and unprotected. When i was teenager i first got really sick, i dont know if it was ME or just a extreme stress burn out...i lost the ability to walk, was very exhausted and had huge troubles with my muscles. Especially my mom didnt support me, she didnt understand but she at least shown me some respect and care even though my father was the one who took care of me through that time.
    Yes there must be some one else who can protect him....organization, advokate, brother, sister, friend...anyone who can speak and fight for him!
     
  20. trsnorth

    trsnorth

    Messages:
    14
    Likes:
    4
    How is your friend doing? The only question I have is he under 18?
     

See more popular forum discussions.

Share This Page