Parent giving my GP false information on me

[Inez]

Hi all

I have severe ME and have been bedbound for most of the last six years. I have just found out that my mother has recently contacted my GP and told them that I am CHOOSING to be in my room all day and that I'm anxious and refusing mental health treatment. I am actually just so severe that I can't speak so having any form of counselling would be damaging and cause a severe crash. When I told her what she did was wrong and explained why she said that she was only worried about me and isn't sorry but is only sorry that I found out. I don't know what to do. It's now on my medical records that I'm mentally ill and choosing this. It actually says I'm making a 'poor lifestyle choice'. I've told my GP surgery in the past that I do not give permission for my mother to speak to them on my behalf so I don't feel I can trust it won't happen again. What should I do to protect myself going forward? This is a living nightmare.

 

[Blazer95]

some people are just full of shit. i am very sorry it happens to be your parent thats an complete arrogant idiot.

are there patient organizations in your country? in germany we have a big one that contact people and help communicate...

 

[Blazer95]

the german patient organization fatigatio e.v. is actually somewhat recognized and has managed to talk to doctors in severe cases and help get people out of GET and stuff so this might work if you happen to live in a country that has such organizations.

the next thing you could do is ask someone of us to spam your stupid gp with informations about ME/CFS (but politely)

 

[Inez]

Thank you @Blazer95
I live in the UK and im actually not sure who are the best people to reach out to. I've not had a good experience with one of the ME charities who supported my mum when she told them I needed counselling, even though i was too ill to speak. The irony is my mental health is OK!
I'm wondering if I should get legal advice but not sure who to contact for that. Is there a UK ME charity that gives legal advice? I'm not well enough to research at the moment so if anyone could point me in the right direction it would really help.

I'm going to make an official complaint against my GP and change GPs.
My mum has been my carer for years and this is making me question if I'd be better off on my own.

 

[Blazer95]

oh sorry to hear that. yeah the UK is complete shit for ME/CFS people. since being informed about carla and millie (and a friend of mine who lives in UK) I fully believe the UK is worse then any random developing country when it comes to ME.

i will try to research a decent me-cfs organization (if it exists) and post it here again. i wont promise much but i can try.

yeah. me/cfs patients should come together more often. we got living groups here in germany where me/cfs people can live among each other. i wonder why other countries dont do that

 

[Inez]

Thanks so much.
Wow I didn't know Germany offered that. I lived in Berlin for a year a while back and loved it. It's seemingly the best place to be for someone like me now! God I wish I was there and not here.

 

[Carl]

You cannot, I repeat cannot "think" your way out of it your situation in regard to ME. A pathogenic infection in your digestive system is causing undigested food molecules to enter your circulatory system which is provoking an immune system reaction. The consequences of that are far more than that including tissue destruction in two essential controlling areas.

This happens so many times in the UK by stupid doctors. My previous doctor was like that and that doctor tried to get me onto a positive thinking course. I changed doctors because they were failing to even read letters from hospital consultants to do tests who were concerned about a test result done at the hospital.

I think that you should read the following thread if you have not already done so. It might be worth getting your mother to read it so that she can see the potential problems that she might be causing you in future if she continues doing what she has already done.
https://forums.phoenixrising.me/thr...pm-uk-time-on-thursday-18th-april-2024.91885/

It would of been helpful if you could of reported what ME charity you did not receive positive help from. What charity was it?

 

[Blazer95]

https://meassociation.org.uk/

https://bacme.info/

https://www.actionforme.org.uk/

https://www.meresearch.org.uk/

@Inez

 

[BrightCandle]

https://meassociation.org.uk/

https://bacme.info/

https://www.actionforme.org.uk/

https://www.meresearch.org.uk/

@Inez

For this the only one worth trying is MEAction. Definitely don't go to the MEAssociation (regulatory captured) or BACME (doctor led lots of concerning things said).

The other possibility is contacting the Chronic Collaboration on Twitter, while you might not be in enough imminent danger for them to intervene they may well give you some details for someone else.

I would start with MEAction, they have a private doctor service which might be a route to a better diagnosis. In terms of private doctors Dr Claire Taylor or Dr Rae Duncan are both well versed on the disease and provide better diagnostics and information and educate your parents in the process.

 

[Judee]

This is from the CDC in the US but could you show it to your Mom. It might help her to see that this is a serious disease: https://www.cdc.gov/me-cfs/about/index.html

 

[Blazer95]

For this the only one worth trying is MEAction. Definitely don't go to the MEAssociation (regulatory captured) or BACME (doctor led lots of concerning things said).

The other possibility is contacting the Chronic Collaboration on Twitter, while you might not be in enough imminent danger for them to intervene they may well give you some details for someone else.

I would start with MEAction, they have a private doctor service which might be a route to a better diagnosis. In terms of private doctors Dr Claire Taylor or Dr Rae Duncan are both well versed on the disease and provide better diagnostics and information and educate your parents in the process.

Thanks for clarifying

 

[Inez]

For this the only one worth trying is MEAction. Definitely don't go to the MEAssociation (regulatory captured) or BACME (doctor led lots of concerning things said).

The other possibility is contacting the Chronic Collaboration on Twitter, while you might not be in enough imminent danger for them to intervene they may well give you some details for someone else.

I would start with MEAction, they have a private doctor service which might be a route to a better diagnosis. In terms of private doctors Dr Claire Taylor or Dr Rae Duncan are both well versed on the disease and provide better diagnostics and information and educate your parents in the process.

Thanks! I'll try MEAction and go from there. So disappointing that we don't feel supported by MEAssociation