Louise Dean
Louise Dean

Hello, your symptoms sound exactly like mine, I also got no help from the NHS and eventually found Lyme Disease online. The commonly used testing is notoriously unreliable and after I got a negative result they didn't want to discuss it further. I got private testing done and was positive. I had several months of anti biotics and other treatments and have improved immensely. I've switched clinics now and hope to continue treatment and get back to full health. If I hadn't of found Lyme...

Hello, your symptoms sound exactly like mine, I also got no help from the NHS and eventually found Lyme Disease online. The commonly used testing is notoriously unreliable and after I got a negative result they didn't want to discuss it further. I got private testing done and was positive. I had several months of anti biotics and other treatments and have improved immensely. I've switched clinics now and hope to continue treatment and get back to full health. If I hadn't of found Lyme disease online or paid privately for my own testing and treatment, I would've been labelled with M.E. and left to rot. I would still be bed or housebound today, I've just come back from a camping holiday to North Wales and am so happy I'm as well as I am and that I've taken the path I have.

Helena Holm
Helena Holm
  • Louise Dean

Hello, the symtoms are also very similar to my doughters. She was bit by a tick seven years old but no doctor wanted to test her eventuellt

Kojak Peg
Kojak Peg
  • Louise Dean

It is terrible the way some Drs behave. This illness has been a real eye opener into modern medicine. And if it weren't bad enough on its own some Drs make it worse. I just hope Governments stop listening to misguided Drs and stop trying to just sweep these illnesses under the carpet, pretending for their own benefit they don't exist

Brenda Vreeswijk
Brenda Vreeswijk

I hear you KP...right now fighting my own battle against autorities because I don't want to undergo another CBT/GET therapy.They don't say I have to go but mentioning it in an official report 6 times!!(on only 2 A-4 pages...the're not pushing at all)The report has a very negative tone towards me because I don't grab the only chance to get better.

Kojak Peg
Kojak Peg
  • Brenda Vreeswijk

I hope you can educate them. Download all the stuff about why GET and CBT is harmful. This is a good one http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Twisk%20Maes%20CBT.pdf

Elizabeth Sanchez
Elizabeth Sanchez

Thanks so much. Your story is moving and inspiring. Let's hopw et influences those monsters posing as Karina's doctors.

Elizabeth Sanchez
Elizabeth Sanchez

Thanks so much! Well put. I ca

Kate Mooney
Kate Mooney

Elizabeth, who says she has doctors, and if she does have doctors, are they real? Me thinks not!

Nancy Blake
Nancy Blake

The message that ME is not psychiatric really needs to get out there. Save your energy, figure out how to manage life with minimal muscular exertion, because muscular exertion is what makes it worse. Karen Hansen's incarceration and treatment amounts to a death sentence, very much like what happened to Sophia Mirza. Wish everyone who gets ME could find out, immediately, that resting, giving your body a chance, is the most powerful way to 'fight' this illness. Doctors will not offer help...

The message that ME is not psychiatric really needs to get out there. Save your energy, figure out how to manage life with minimal muscular exertion, because muscular exertion is what makes it worse. Karen Hansen's incarceration and treatment amounts to a death sentence, very much like what happened to Sophia Mirza. Wish everyone who gets ME could find out, immediately, that resting, giving your body a chance, is the most powerful way to 'fight' this illness. Doctors will not offer help and mostly will give bad advice (supported by NICE) because the UK party line is that this is psychiatric and sufferers need to be encouraged to get over their 'irrational' fear that exercise will make them worse. So best to save your energy by keeping away from such advice.

Kojak Peg
Kojak Peg
  • Nancy Blake

Yeah Karina and Sophia cases are frighteningly similar and yet these Drs get government support and professional accolades while their actions condemn so many. And when your as ill as Karina any stress or activity will make things a thousand times worse

Brenda Vreeswijk
Brenda Vreeswijk

KP...educating them would be great but unfortunately useless.Last may the new guidelines for ME/CFS still containes CBT/GET as main treatment.They follow the guideline no mater what...it's the guidline that need to be changed.That is what's been working om but until now nothing.It's still concedered a spycological illness although it is numberd N609 wich means Neurological.Can you still follow it?Thank you for the link,I already new it...Prof Meas is not a person they really like,cause he's got a diffrend opinion.

Kojak Peg
Kojak Peg
  • Brenda Vreeswijk

Yeah, they're like automatons aren't they, just following orders. And like you say anyone who goes against the grain, or has an independent thought is deemed to be abnormal and subversive. And are ostracised like Prof Meas and Dr Myhill. If there were any justice in this world they would suffer from severe ME and be forced to undergo GET. Then it would be taken seriously, and there would probably be a cure within a fortnight. As it is we are left to suffer and face ridicule from the very...

Yeah, they're like automatons aren't they, just following orders. And like you say anyone who goes against the grain, or has an independent thought is deemed to be abnormal and subversive. And are ostracised like Prof Meas and Dr Myhill. If there were any justice in this world they would suffer from severe ME and be forced to undergo GET. Then it would be taken seriously, and there would probably be a cure within a fortnight. As it is we are left to suffer and face ridicule from the very people who are supposed to protect us and care for us in your hour of need. Modern medicine, money and politics, otherwise know as, the story of what happens when a Government whats to save money and are willing to make real illnesses disappear to do it. Not a very catchy title, but a very dangerous game

Brenda Vreeswijk
Brenda Vreeswijk

Thank you for sharing,well "at least" they thought it was viral...the first thing I heard when I got il was: "your overworked and heading towards a depression" and when my GP got involved she said that was defenitely not the case.And then they said.."O,the its a little virus"Just rest a bit and the go exercise.I started to swim,first time for about 10 minutes just laying in the water...it took me a week to recover.What happend after that...well it's to long to put in this post.

Kojak Peg
Kojak Peg
  • Brenda Vreeswijk

yeah I was very angry with my Doctors but I know know things could have been much worse. I could have been seen by a £$%^ing psychiatrist and the worst thing about psychiatry is it isn't even evidence based medicine so it is because they say it is, which is no way to go about practicing medicine. Especially when there is plenty of clear evidence to show ME is real. I think it's politics and ambition and the patients are the ones who end up paying and in some cases paying with their lives

Kojak Peg
Kojak Peg
  • Priscilla Ling

Thanks Priscilla We have written to lots of human rights groups and will continue to do so

Priscilla Ling
Priscilla Ling

Thanks for your story. Karina Hansen is a case of civil and human rights violation and gross mistreatment.