Doctors and nurses have failed me. There is no further support out there for me
Posted , 9 users are following.
hi. i am 16 years old and earlier this year i was finally diagnosed with cfs. it had been an ongoing thing for three years. i had also battled with depression which made things confusing as it crossed over alot. I have ofcourse been in and out of doctors and hospitals however when the day came to my disgnosis the nurse told me they could give no support to me as i was too young and in my area there were no support groups out there. From then on I have been on my own and the nhs has failed me as i dont know what to do. my cfs only gets worse. no medication helps , i have my A Levels coming up in september and yet i still have cfs and i have no one i know with it so i cant talk to anyone . does anybody know of any online group chats, people with cfs can talk together ?
0 likes, 4 replies
Emmsee chika
Posted
Chika, I am assuming they've run all possible tests. I ask that as CFS is a term which came after ME in an attempt to answer critics of the encephalomyelitis ( brain inflammation) bit. It then pulled in many who had undiagnosed non ME conditions. Then that confused research- not that there was much- except by the psychiatrists who got a career out of since the 80's and it suited politicians to be claiming to get the sick back to work. So, first, you need the moral support and advocacy of charities like Action for ME and ME Association. AFME has a young people's group too. Along with research, moral support and regular magazines, they have links to welfare support, people who can help you in dealing with school, college, university etc. You are young and so probably will do Twitter and Facebook where you will find many people like you. It won't cure you but may help you feel emotionally stronger. Take courage- I've had ME since 1985 but those years of struggle to be believed, are paying off for your generation eg the scientific proofs are now out there. Please check out Ron Davis and OMF www.omf.ngo You will be much better pursuing these paths than on here but glad you reached out- I only joined today as I was furious with Dr Jarvis peddling for nonsense. Remember- you are not alone! Good luck!
CHRONIC FATIGUE SYNDROME
Notifications
Dr Jarvis should be sacked for ME comments
Unfollow
Posted 3 hours ago, 3 users are following.
Emmsee
Emmsee
Dr Jarvis peddles quackery in a so called 'peer review' of Sally Turner's "The latest thinking on CFS". Educate yourself please Dr Jarvis by looking at what Dr Ron Davis and his team are doing at Stanstead. Shame on you! Anyone with ME, read that Dr Shepherd specifically stated LP, mickle and reverse therapies are all unproven and potentially harmful. Yet in that very article there is the link to Sally Davis. Who are these gurus? Try 33 years of living with a disease which has clear mitochondrial abnormalities in the citric acid cycle before suggesting even vaguely that snake oil therapies work. Resign Dr Davis, or how about a wide public apology and wide press release on your latest research which you are now about to embark on to educate yourself about ME. Note- ME, not the convenientally renamed in the 80's
'CFS ' which has now caught many tatt people in its loose definitions. Shocking dereliction of duty and your Hippocratic oath 'doctor'.
0 likes, 1 reply
New discussion
Reply
Emmsee
Emmsee
Type your reply to Emmsee
100:0
Attach images by dragging & dropping, manually entering them, or pasting from the clipboard.
Anything you post in these forums is publicly visible. Don't include information you're not comfortable sharing in public.
Post Reply
1 Reply
jowalsh
jowalsh
Emmsee
Message
Posted 31 minutes ago
Dear 'fellow', as a fellow sufferer ... I hear your anger. My only question is: have you told this ignorant doctor what you think of his research? If not, then please do so!
Good Luck and do re-channel your precious energies. They really are NOT worthy of your time.
Jo
Reply
Thankyou Jo. I am angry you are right. Not sure if Dr Jarvis will see this or how to ensure she does. I'm pretty sure she is on Jeremy vines radio 2.
1330:150
Attach images by dragging & dropping, manually entering them, or pasting from the clipboard.
Anything you post in these forums is publicly visible. Don't include information you're not comfortable sharing in public.
Post Reply
Back to top
by TaboolaSponsored LinksFrom The Web
People Who Had A Catalogue Account With Very, Littlewoods or Next - Read This
The PPI Finder
Barclays To Refund £9 Billion To Customers (Look Up Your Name)
Smart Finances
New Bluetooth Hearing Aids Take Britain By Storm
Compare Hearing Aids
You don't need a gym and dieting if You Do This
Direct Healthy
We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Health Information
Medicine directory
Community
Symptom Checker
Medical professionals
About us
Authors
Contact us
Terms and conditions
Privacy policy
Advertise with us
Our clinical information is certified to meet NHS England's Information Standard.
Read more
Information Standard Certified Member This website is certified by Health On the Net Foundation. Click to verify.
Health information you can trust
Patient aims to help the world proactively manage its healthcare, supplying evidence-based information on a wide range of medical and health topics to patients and health professionals.
© Patient Platform Limited. Registered in England and Wales. All rights reserved. Patient does not provide m
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a U
amy93209 chika
Posted
I'm really sorry to hear you are going through this so young and feel alone. Remember there are many out there just like you. I myself have been sick since i was young and i to didn't have doctors that helped me (or that even believed me) and family that wasn't supportive (they thought i was lazy). When I became an adult I had a little more control because I now could choose where to live and how far to travel opening up the opportunity to switch doctors until i found the right ones that cared and helped me. I didn't recieve a diagnosis until 2 years ago (I am now 35). It took a lot of patience and strength to wait so long but i did do it. And the doctors are wrong. They can absolutely try to help you with your symptoms. I'm actually going to see a geneticist this month because they suspect I have eds which often get misdiagnosed as cfs. You can even have other things that may be smaller that affect cfs and make it worse such as h. pylori, Fibromyalgia, Thyroid issues. It is important to continue seeing the right doctors so you can get to the right amount of care. This will sound odd but you do have to accept there will always have more trouble than others your age. Its like grieving but once the acceptance sets in it does help somewhat with depression. its just coming to terms with you can live life you just need to sometimes do it differently. Facebook has support groups for cfs if you type it in its very easy to join and they will give you the support you need and even some suggestions on how to help. My biggest issues personally are brain fog, anxiety, severe fatigue, attacks that feel like a severe flu, the tremors that come with the attacks, and pain. I take dulexotine for the anixety, adderal helps with my add but also with fatigue, gabapentin helps with the shaking pain and attacks, and nortriptyline helps me sleep a little better. I am married and have 4 kids and even though i struggle and don't do certain things others my age may i found a man that loves me even though i was sick when we met and we managed to have a family and wonderful life. I found knew hobbies that i was more able to do and i didn't cry about the friends or family i lost while i was going through this because even if i was healthy i don't want people in my life that are only there for me when everything is perfect. One of my kids are 16 just like you so I just want to give you a big mama hug and let you know it will be alright no matter what and you can message me anytime.
KPD chika
Posted
Chika, I'm so sorry to hear about how difficult this is for you. I can't imagine dealing with the debilitating symptoms of CFS at such a young age. Are your parents supportive of you? If so, I'm sure they could help you find some support groups in the area. There are some CFS/ME support groups on Facebook and they are private/closed groups. You may want to reach out there. My heart goes out to you being so young and having to deal with this! KPD
Beverley_01 chika
Posted
Hi Chika,
Firstly well done for continuing your studies through this trying time as that is monumental. The Good news is that you should be able to get extra support for your studies with the diagnosis ? Can you get your parents/an advocate to talk on your behalf? Cfs/me is classed as a disability and so they need to make "reasonable adjustments " to help you attend. That includes exams. Ask your parent/advocate to ask about an EHCP plan to get the support in place.
The NHS could have referred you to healthy young minds/ CAMHS (children and adolescent mental health services) because of your age. Some places have Barnardos counselling services or voluntary services too.
You can post on here for support, you are definitely not alone and/or as pointed to elsewhere, maybe a face book group? I don't have Facebook myself. I don't know if the Me association an an online group. I have been a member for a few years now and has useful information. It is not alot of money to join and your membership gives you regular magazines.
I hope this helps,
Beverley