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Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Nov 28, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    This thread has arisen from the discussion that has taken place on the

    thread: http://forums.phoenixrising.me/inde...er-with-prof-crawley.56221/page-9#post-937549

    We are discussing the best way forward for a mum who has a child in her early teens who has been ill for 18 months with fairly severe ME and who has now been told she must get better within four weeks or face becoming an inpatient and subjected to 'intensive treatment' over a week or so. This will be a disaster for the family. It has happened before under the direction of the same paediatrician, ;) leaving the child very severely handicapped.

    Dr NS and TT have already been involved earlier, and the situation improved as a result. But now that the child is still ill the professionals are determined to take action and re-involve EC.

    The GP has expressed annoyance when presented by information sourced from knowledgeable doctors and individuals that conflict with his belief system. He was sent the MEA's Purple Book, but I gather he objected to it for reasons I do not know.

    I understand the paed. believes ME is psychiatric too, and is referring back to Bath, which 'terrifies' the mum.

    TeamPR have already produced a plan of action for Mum but I think she is feeling overwhelmed and may not be able to stand up to the professionals who are making these threats. Mum says 'all the doctors' tell her 'ME is a psychiatric condition', and when she declined/showed reluctance to permit her child to be admitted for the intensive exercise/treatment regime they questioned whether she wants what is best for her child.

    This is where TeamPR can make a difference, :thumbsup:

    We want to produce an information pack for paediatricians who think that ME is psychiatric and/or it is a short-term illness that will respond to GET or, as in this case, intensive therapy/physiotherapy/exercise. Refuting the claim that CBT is the 'only treatment that is proven to successfully treat ME' would also be useful. It would need to be ready by the New Year. In fact, I think it may be better to forward it to the paediatrician with a covering letter signed by a doctor well before Mum's appointment.

    It would be great it you could list the documents, scientific papers, and other evidence that could be included in the pack.

    @JaimeS has already offered to place some suggestions here. Thank you!

    Thanks everyone. :hug::thumbsup:
     
    maryb, Skycloud, fingers and 9 others like this.
  2. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I am well versed in pr.
     
    Countrygirl likes this.
  3. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Hmm not uk though more us.
     
    Countrygirl likes this.
  4. Countrygirl

    Countrygirl Senior Member

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    Hi @GONZ0hunter :)

    Thank you for responding.

    It doesn't matter where you are located as we use the US published papers and quotes from well-known specialists for evidence.

    I suggest you read the thread I linked in the OP to get up to speed with the project, if you would like to make suggests and help complete this project.

    Thanks!
     
    MEMum likes this.
  5. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    I read some of it. You should build a 1page story of the child and immediate need. Then you need photos and video that is done well. Rawish so a news crew can build a package. Google broll and shoot interviews with drs or who ever you consider and expert. Remeber an expert here isnt one until they are other places. Like most fact checkers will google their name to check for credentials Then start calling local stations or not local so you can clean your story before you go hard for getting your package picked up.

    Its really amazing what a canon can shoot video wise these days. Lots of art schools have good shooters who may do it for credit. They like these kind of things,

    You need like a 3 minute story so 15- 30 min raw footage. I woukd see if they would want to shoot it. Try and become freinds with editors and executive producers of local stations. Appeal to their egos ( they are huge). Make sure and say your thinking of doing a us press tour. Local people eat that up thinking they will get press over seas
     
  6. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Build a drop box of stills and a 1 pager of who what when where etc. you may find a talent agent willing to spec help you. Google actors in your town and see who represents the big anchprs or field reportters
     
  7. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    So every day anchors and backpack journilist fill 22 minutes of news and you want to be 3 minutes but you have to be polished and 100% truthful and accurate with a flare of “think of the children”. Your child chould be this child, etc.

    Not to be cruel but your playing to the bleed it leads mentality. You can alao set up a satellite media tour
     
  8. Countrygirl

    Countrygirl Senior Member

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    Those are wonderful suggestions, @GONZ0hunter , but we only until New Year to present information to the paed, With such a short time frame, our priority is to produce an information pack of sound scientific material to send to the hospital to convince them that the child must not be taken against her will and subjected to a course of intensive exercise.
     
    MEMum likes this.
  9. GONZ0hunter

    GONZ0hunter

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    Fragelle rock, USA
    Cant help you their..well...i do know some people.

    The photos and 1 pager could be done today. Use the nicest phone shooting highest rez hdr and i can clean them up during my infusion tomorrow. I will be stuck in a room for 8 hours,

    If you do that i will contact the people i know. Ive just been burned by people who want to have all the stuff but not willing to do the work. Build a dropbox and email with daughters name cfs @hotmail or something catchy that wont get cut with the garbage they usually see. News people are innundated with this all day so you have to stand out.

    What in one sentance is the goal.
     
  10. GONZ0hunter

    GONZ0hunter

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    I forgot the question mark

    What, in one sentance, is the goal?
     
  11. Mary Poppins

    Mary Poppins 75% Smurf

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    I have been unwell since my early teens with a diagnosis of CFS/ME.

    What would you like?
     
  12. Countrygirl

    Countrygirl Senior Member

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    Our aim is to give the child every chance of avoiding being taken from Mum and being admitted to a hospital against her will and forced to receive intensive treatment, which must be physiotherapy over days to 'make her well'. We know what this leads to! :ill:

    If you read the other thread, you will learn that a number of actions to be undertaken have been communicated to Mum but I think she feels overwhelmed, so we need to take some action ourselves to protect the child.

    We are planning to assemble some papers and evidence about the biomedical research, the dangers of GET and the evidence that proves that such an approach will damage the child. This will create a paediatricians' information pack that can be used in other cases too.

    What we would like people to do is to list the most relevant scientific papers here and any other evidence that we can use. We can then sift it and assemble the best documents for the pack.

    We should be able to get this done in a fortnight I should think.

    A collection of hard-hitting quotable quotes from specialist physicians would be most useful as they could be used on an opening page and convey the thrust of the message in seconds.
     
    Skycloud, Gingergrrl, Wally and 2 others like this.
  13. Deepwater

    Deepwater Senior Member

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    Time is very short but you may need the publicity @GONZ0hunter suggests as a back-up should the paed/ hospital ignore the scientific evidence you present - which knowing the egos of British doctors I'm afraid they may well do.

    I have absolutely no background in PR but can offer to proofread any text that is produced, although my eye is not what it was before I had this illness. A person presented with two texts arguing two opposing viewpoints will sadly tend to be swayed by the one that is more polished and free from idiosyncrasies of grammar and punctuation - it will just look more learned. Unfortunately for us, the BPS school are masters of editorial polishing.
     
    MEMum, Skycloud, anni66 and 3 others like this.
  14. Joh

    Joh Inactivist

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    Hi, sounds to me like there was a misunderstanding. I believe "team PR" used by @Countrygirl meant Phoenix Rising vs: public relations? :)

    @Countrygirl, I guess you already know this source but I list it just to be sure: https://www.omf.ngo/mecfs-and-pediatrics/ Includes the peer reviewed primer and fact sheets and an ME/CFS sample physician letter to school.
     
    Mary, justy, merylg and 5 others like this.
  15. Joh

    Joh Inactivist

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  16. PinkPanda

    PinkPanda Senior Member

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    It's really great that you guys are doing something about this. I'm shocked that this is still happening:cry:

    Some studies I found impressive:

    Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/chronic fatigue syndrome
    https://df6sxcketz7bb.cloudfront.net/manuscripts/89000/89376/jci.insight.89376.v2.pdf

    Metabolic features of chronic fatigue syndrome
    http://www.pnas.org/content/113/37/E5472.full.pdf


    Increased Concentrations of Homocysteine in the Cerebrospinal Fluid in Patients with Fibromyalgia and Chronic Fatigue Syndrome
    http://www.tandfonline.com/doi/abs/10.3109/03009749709105320?journalCode=irhe20&
     
    Mary, MEMum, Skycloud and 4 others like this.
  17. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Mary, rosie26, MEMum and 6 others like this.
  18. notmyself

    notmyself Senior Member

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    i think a 2 day cpet test would be enough proof that is not psychiatric and that exercise will hurt the patient..the only problem is that it may cause harm...but at least it may shut the mouth of those doctors..
     
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  19. Joh

    Joh Inactivist

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    EC often emphasizes that she believes pediatric ME and ME in adults are different diseases (or "conditions"). So it's possible that studies with adult patients might be dismissed.
     
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  20. Binkie4

    Binkie4 Senior Member

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    I agree that the Workwell research could provide evidence of the different capacity for exercise shown by pwme.

    I have not seen any of this as applied to children but maybe I just missed it.
    However there is no reason to asssume it is different for children.
    I would be unhappy subjecting a child to this ( I don't think it should be done) but Workwell's existing work could be used.

    EDIT: sorry. Just noticed @Joh's comment. Perhaps research on adults would just be dismissed.
     
    justy, MEMum, Skycloud and 1 other person like this.

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