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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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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    I have wondered if this is a possible solution, but it would depend on the Mum and child's agreement and if the psychologist would permit it. I may be wrong, but I suspect that the psychologist wants to see the child on her own. Mum would have to confirm that though.

    I think the child and Mum have very good grounds for refusing to attend as the psychologist, probably parrotting what the paediatrician had told her, informed the child that her illness was not a physical one. This belief places the child at considerable risk and I think is grounds for refusing to attened the appointment. I have a hunch though that Mum will be too fearful fo the consequences to stand up for herself.
     
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  2. Countrygirl

    Countrygirl Senior Member

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    I don't think the child has been tested and I suspect Mum knows nothing about it. It is an excellent point though. I will pass on the suggestion @PatJ J
     
  3. char47

    char47 Senior Member

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    I don't think you'd get very far with this, as temperature (unless very high) can fluctuate a great deal & can sometimes fluctuate as a result of stress/trauma/PTSD etc i believe, so they will just twist it to apparently prove their hypothesis.
    I would also warn against doing anything that makes the mother appear as if she is paying (in their world) undue attention to the childs health/symptoms many times throughout the day - they'll just use that as 'proof' that the mother is hypervigilant & causing the problem. ( 'she's so obsessed that she's been taking the childs temperature 5 times a day & recording it - no wonder the child thinks he/she's ill') ...... so I think it could backfire.

    The only time a temperature reading would be helpful is if the kid had a fever, but only then if it was a health prof who recorded it & then they would just say he had a cold/virus whatever & wait for a fortnight & take it again - when likely be normal.
     
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  4. anni66

    anni66 mum to ME daughter

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    Any update @Countrygirl ?
    Has recent media coverage helped ?
     
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  5. Countrygirl

    Countrygirl Senior Member

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    I have sent Mum more information, @anni66, but as far as I am aware the child is still having regular appointments with a psychologist who has told her there is no medical reason why she shouldn't function normally. When she isn't cured by the attempt to talk her out of her belief that she is too ill to go to school and be active, then I think we can guess what will happen. Mum does though have all the information she needs to rebutt their allegations. We can't do more at this stage. If she is taken as an involuntary patient as is threatened, as she has been told then we do have a problem. I have been advised that the paediatrician will use the same powers doctors utilize to overrule JW parents when a sick child requires a blood transfusion. The paed has said that if Mum cares for her child then she will agree to inpatient intensive exercise therapy. Mum thinks she can just refuse...........sadly, they will then take action.
     
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  6. Countrygirl

    Countrygirl Senior Member

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    Woohoo! EC is standing down as VP of the CMRC!!!!!

     
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  7. Countrygirl

    Countrygirl Senior Member

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    Suddenly the link vamooshed and a new message appeared which says thsi:

    Now what could that role be? Has the university finally come to their senses? :p Is she now cleaning the labs?:D

    Curious.

    https://www.actionforme.org.uk/news/​cmrc-update-new-purpose,-objectives-and-values/
     
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  8. andyguitar

    andyguitar Senior Member

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    Hmm maybe the game is up.
     
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  9. anni66

    anni66 mum to ME daughter

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    Seems to be doing a replication study on antibiotics v surgery in appendicitis- so ironically something to do with research!

    https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-018-2520-z
     
  10. anni66

    anni66 mum to ME daughter

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    Countrygirl likes this.
  11. Countrygirl

    Countrygirl Senior Member

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    [​IMG]

    A new tweet from Jane Colby.
     
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  12. anni66

    anni66 mum to ME daughter

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    Was this the child mentioned here?
     
  13. Countrygirl

    Countrygirl Senior Member

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    No. it is another one @anni66
     
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  14. anni66

    anni66 mum to ME daughter

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    :(
     
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  15. anni66

    anni66 mum to ME daughter

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    Are these concentrated in specific areas? ie could these actions be referenced to particular NHS Trusts and specific consultants and primary care individuals ?
     
  16. Countrygirl

    Countrygirl Senior Member

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    A certain paediatrician we know has national control, so it makes little difference where the child is.

    When a child is diagnosed,, no matter in which area, I am informed that the paediatrician automatically defers to you-know-who. :(
     
  17. BeautifulDay

    BeautifulDay Senior Member

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    Has this child had any genetic testing (23andme, WGS, or WES)? If yes, I'd be happy to look through it to see if I can discover any mutations that were missed.

    If she hasn't had it done yet, I suggest WGS or WES immediately. Genetic results could be the proof positive against the doctor who is going in the wrong direction.
     
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  18. Bourlet

    Bourlet

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    We’re not far off this situation ourselves, so following closely. My 18 daughter is very unwell, bed-bound, tube-fed, catheter and extreme pain. She become very ill following the ‘care’ of EC, though we have managed to extract her from her clutches. Very interested in the idea of genetic testing. What could this throw up that might help? What is WGS or WES?
     
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  19. BeautifulDay

    BeautifulDay Senior Member

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    WGS is Whole Genome Sequencing (more expensive, but covers more)
    WES is Whole Exome Sequencing (less expensive, but covers a significant portion of the locations covered by scientific studies)

    If there is a doctor that wants to lock up your daughter, then I suggest testing privately at first so that you are in control of the data. Make sure it's not one of these genetic testing companies that gives you a summary of the variants found (a health report), but not the data. Nobody yet has a database with all the mutations known today. The data is where the money is and where you can rerun her variants as new pathogenic mutations and new scientific discoveries are found and as new databases are put online. I suggest testing with a company that provides VCF, FASTQ, and BAM files on a flash drive.

    Then I would run the data through every database there is to pull out the variants. Then I'd figure out which mutations are pathogenic or deleterious or highly suspicious on disease/syndrome causing genes. It's a little like learning a new language, but then again, it's a step towards getting your daughter well, so it is very worth all the effort. There are geneticists who will do this, and if you can afford that it's great. However, once they are done, make sure you get the data. Don't allow a hospital to ever do genetic testing without first getting in writing that you will get the backup files. Also a geneticist will never spend the time that you can analyzing her variants, so make sure to do your own research in addition.

    There are many reasons behind debilitating fatigue. There can be genetic reasons behind fatigue. Not all of the genetic mutations are known today. Yet, fatigue can be due to genetic mutations that cause Mitochondrial Disease/Dysfunction, Sleep Syndromes, Glycogen Storage Disease, etc.... Often times, fatigue can be multi-faceted. There are many disease causing mutations already known to scientists and in the medical journals.

    There are a lot of theories behind CFS/ME and a lot of great scientific research (and some trash research) and more studies that we all here want done.. I wish I had all the answers, but I don't.

    However, if a child is about to be institutionalized for debilitating fatigue and was about to be forced to undergo GET and psychiatric treatment due his/her symptoms, then one strategy is to prove that what the child has wrong with her is not in her mind. Any positive tests for anything including: labwork, MRIs, etc... that are abnormal and show things like gastroparesis or low oxygen uptake during exercise testing is very powerful. Those things cannot be faked.

    The same thing goes for genetic mutations that cause disease/syndromes that have fatigue as one of the symptoms. Showing proof that the condition is real is very powerful.

    You don't need to find the entire answer (such as what is CFS/ME and how to fix it -- yet that would be wonderful for all of us). What parents who are forced with the possibility of doctors force-ably institutionalizing their child in a psychiatric ward need to do is prove that it's not in the child's mind.

    I feel very strongly about this because this could have been me or my children. My symptoms were dismissed as a teenager, my children's symptoms were dismissed. Then we learned that we have a pathogenic mutation for Mitochondrial Disease. The doctors are now studying our family.

    When I went to doctors (before knowing about the MitoD), I learned to not bring up the label of CFS because doctors would then just suggest reducing stress and talk about the possibility of taking SSRIs. Instead of focusing on debilitating fatigue, I learned to focus the appointments on the issues that were proven, such as the exercise intolerance, the aminoaciduria, the diabetes insipidus, the chiari malformation, the autistic spectrum, the muscle spasticity and weakness, etc.... By focusing on things that the doctors could get their heads around, those doctors then understood that such things can go hand and hand with fatigue.

    It's sad that we had to do this (focus on a secondary symptom when the most troubling symptom was debilitating fatigue). We don't have to do that anymore now that we know it's Mitochondrial Disease. Having a pathogenic mutation that impacts the mitochondria which are located in every cell in the body and produce more than 90% of the body's energy -- no wonder we are severely fatigued.

    I look forward to the day when someone has a diagnosis of CFS and is taken seriously and doesn't see the eye roll from doctors. However, with me and the kids, we live in the real world and had to function -- so while CFS was diagnosed (as well as many other things), telling anybody in the medical community (my doctors) about the CFS just made them give up on helping me find out what was wrong and how to get better.

    If you can get your daughter into a Mitochondrial Disease specialist or a doctor that specializes in glycogen storage issues, etc.... these doctors take the fact that someone can have a medical reason for debilitating fatigue that is not just a psychiatric issue.

    But as I mentioned earlier, genetics has come a long way and might just provide you an answer for your daughter. It's just another tool, like lab tests, and MRIs in putting it all together.
     
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  20. anni66

    anni66 mum to ME daughter

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    We initially got the ATP profiles test from Acumen labs. This showed that my daughter had issues with ATP production, ADP to ATP conversion and oxidative phosphorylation was way below normal - so significant problems with the basic mechanics of producing energy. I had to do an interpretation , based on @Hip ' s posts which GP took seriously. Consultant did not understand it, and disappointingly didn' t want to understand it.
    Considering genetic testing as my best guess is compromised liver function ( but normal blood tests) . We don' t have anyone who could interpret ( snd i don' t think i am up to that yet)
     
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