What happened to Sophia Mirza who died from ME/CFS

[MacAlexandra]

No, Wessely should not feel ashamed, because he's not capable to feel shame. Simon Wessely should be JUDGE for CRIMES AGAINST HUMANITY!

[justinreilly1]

Many thanks Criona and Roisin for shedding light on this horrible scandal. You are spot on. Wessely, White et al. are killing people with their lies and must be removed from their posts and the medical profession. I am so sorry for your family's suffering. You are true heros for forging on for all people with ME despite (or perhaps because of) the abuse you have endured from Wessely et al. My thoughts are with you. RIP Sophia.

[supahfreeak]

This is terrible. I struggle with cfs, but I had no idea how bad it can be for some people nor that they can die. There are places here in America that treat cfs MUCH differently than in the UK. It's unfortunate you hadn't come here. I'm so so so sorry for your loss ! I'm also very alarmed that this disease can kill people, considering it is something I struggle with myself.

[heidelicious]

Thank you for sharing what happened to your family. Patients and our families need to get together and stop this kind of thing from continuing. This may be an extreme case as far as death is concerned, but the opinions of her doctors is pretty common. Where I live in the US, it is anti-depressants, counseling, and exercise that is constantly being pushed on me. It adds a certain amount of anger and frustration on top of my illness, to be treated this way. God bless your family and all patients.

[jessical1969]

Thank you for posting this. I'm sorry Sophia had to go through this,but happy to see you have told her story

[moomoobindi]

I'm sorry for your loss. I cannot believe you can be put in a mental hospital in the UK for this, for once I'm glad I'm in the US. I'm 36 and had this DD for 18 years. I don't expect a cure in my lifetime. My life has been robbed from me. I guess it is going to take more of us dying from this for anything to happen.

[dageezerboi]

very sad story. RIP Sophia

[MaverickMiracle]

Thank you for all your comments. I am Sophia's sister Roisin, and it was me who interviewed my mum Criona. There is also a documentary film coming out about ME that has interviews with ME patients and doctors explaining the true face of this disease. It is called 'Lost Voices' .

I am also a journalist and am doing all I can to help with the ME cause and writing about it. Look for Roisin Wilson. Orwellreturning - Attention seeking is at the top of my stupid accusations list by medics.

[jessical1969]

@MaverickMiracle

good for you Roisin, you did a great service with this interview. You and your mother, I will definately watch "lost voices" [I hope the some of the general public will see it also]

[orwellreturning]

Excellently presented video, thank you to Sophia's Mum and the producer. A credit to our community :)

I've had severe M.E for 11yrs now. Also been accused by docs and counsellors of pretending be ill to gain attention/help. Rubbish. I've never had less social contact, less attention, and less help in my whole life! I've also seen several indpendent psychiatrists and all have said that I have no psychiatric illness whatsoever.

[2876543ify]

Psychiatrists did her a favor putting her out of her suffering, no one should have to endure that much suffering for such a long period of time, they put her out of her misery, she is at peace now....

[2876543ify]

I don't think this is a cruel thing to say, but I think the Psychiatrists did her a favor putting her out of her suffering, no one should have to endure that much suffering for such a long time, and if you think I am wrong from saying this, then you are cold, no one should have to suffer through that much, she is in Heaven now a better life for her and there probably wont be a cure for yonks to come.

[shinninglight100]

I had a room mate in a mental hospital and he was very sick and had M.E/CFS. The psychartrists were drugging him up on heavy anti-psychotic drugs making him so much worse that he found it hard to breath at times and ended up in bed a lot during the day because the medications were making him unable to move around. He was sectioned. He was released 5 months after I was and I don't know what happened to him I tried, watching him suffer was horrible to watch day after day after day, poor Colin.

[monogirl3]

god bless sophia, & love to her mammy for continuing to speak out. x

[Hydrapup]

This culture of arrogance has to change. These people are so sure they are right about everything and then someone needlessly dies and still nothing changes.

[lynne111able]

How sad to watch this...my heart goes out to Sophia..her mom's courage and poise is unbelievable. What a tragedy..how many more pople have to suffer and now die,because of the medical community. SHAME, SHAME ON YOU!!!

[Gabrielzelbo]

No treatment I have been offered by orthodox medicine (under NICE) has helped. My career has ended and the Department of Work and Pensions continue to persecute ME/CFS patients in an effort to force them off benefits. ATOS - the US 'medical assessment' firm employed by the UK government to assess ME/CFS patients routinely lie in their assessments (I have proof of this personally) in order to meet targets which they are given for declaring as many claimants as possible 'fit for work'.

[orwellreturning]

@Gabrielzelbo Check out Benefits and Work dot co dot uk. For a small annua fee (think it's about a tenner?) you can join and get free access to as many downloads of their guides to applying for Incapacity and DLA as you wish. It's a lot of exhausting, demoraising work to get through it, but worth a shot. Also, do do DO go to appeal. I read that many ME patients get turned down on their first application, yet have a fair rate of success if they go to appeal. Rememer to pace your ''work'' tho'.

[Gabrielzelbo]

@orwellreturning Thanks. I actually went to appeal and won but it wasn't easy. Actually, I was too ill to attend personally so someone went on my behalf. I think this helped as it 'proved' I was too ill to work. It's scandalous what ATOS are doing to the poor and ill people of this country; particularly those suffering from such a stigmatised illness as ME. Good luck to those who are forced to claim state benefits for whatever reason.

[Gabrielzelbo]

Thank you for posting this. I'm an ME sufferer (10 years) and a psychotherapist. I'm familiar with GET and CBT, both of which are an insult to most ME sufferers and both of which I've refused. The main reason patients stop CBT treatment is because they report worsening symptoms. Yet this is first line treatment as advised by NICE.

[Liam2621]

@Gabrielzelbo what do u think of reverse therapy or mickel therapy

[thx1138mindlock]

This video needs to be posted on facebook and any ME CFS forum you can find.

[hobbily]

GOD BLESS SOPHIA this iollness is real and it hurts physically and mentally when will doctors listen to us ??????????? it's not a mental illness!!!!!!!!!!!!!!!!!!!

[hobbily]

GOD BLESS SOPHIA 

[deegill23]

your an inspiration, so glad you had the strength to make this video. I have fibromyalgia and ME/CFS, my 19yr old fibro, my 10yr old fibro and ME/CFS. my mum always asks if i've taken my youngest to my doctor, ive not, why does she ask? well, i've seen DR Perrin who diagnosed her with ME/CFS and she is having the perrin technique treatment. my mum thinks i should get a 2nd opinion. tried to explain a general doctor doesnt understand, so good luck, iwill visit Sophies website x

[thx1138mindlock]

Simon Wessely will be taken to court by countless families and patients with ME, including the Mirza's who suffered their terrible loss of poor Sophia.

As Criona said, ME is classified as neurological disease (ICD-10, G93.3) and thus Wessely and his supporters acted illegally in how Sophia was mistreated.

ME never was classed as a mental health illness, and the psychiatrists thought no one would care. Except millions of people do and millions now seek justice.

[HylomantisLemur]

Such a sad story :(

I wish I didn't have ME. Sometimes the hardest party is people's lack of understanding.

Criona is an inspiration.

[motherhen20684]

This is not a mental illness and anyone with a relative with this illness knows only too well that this is not the case, The affects on the patients who has had their lives stripped away and the misery for the relatives who have to witness the pain and misery they suffer is just beyond belief that this could have happened. My heart goes out to Criona I understand her suffering and hope she never gives up!!

[miya1030]

Just incredible. The cruelty and abuse inflicted on people who are already suffering unbearably from this tragically misunderstood and unrecognized disease who's mistreatment has been sanctioned by various figures of authority in the medical and government establishments is absolutely unconscionable. Please support the heroic efforts and achievements of the Whittmore Peterson Institute in Reno Nevada as they conduct their groundbreaking research into the cause of this horrific illness.

[miya1030]

Just incredible. The cruelty and abuse inflicted on people who are already suffering unbearably from this tragically misunderstood and unrecognized disease who's mistreatment has been sanctioned by various figures of authority in the medical and government establishments is absolutely unconscionable. Please support the heroic efforts and achievements of the Whittmore Peterson Institute in Reno Nevada as they conduct they're groundbreaking research into the cause of this horrific illness.

[KatieUKLondon]

Dear Criona, I have just read your story in The You Supplement of the Daily Mail 16th May. I felt so moved by the story and so upset to read about the treatment of the NHS towards your daughter. I don't know really what to say. I just hope you are finding some peace within your life in the knowledge that hopefully the medical profession are now taking ME seriously. With Love Katie

[KatieUKLondon]

Dear Criona, I have just read your story in The You Supplement of the Daily Mail 16th May. I felt so moved by the story and so upset to read about the treatment of the NHS towards your daughter. I don't know really what to say. I just hope you are finding some peace within your life in the knowledge that hopefully the medical profession are now taking ME seriously. With Love Katie

[StopUnumNow]

Many thanks for posting

[PaulBeet]

Thank you Criona for saying what needs to be heard about mistreatment

of CFS/ME people ! I hope the problems in the UK will be an issue during

the election campaign. Rest in peace, Sophia. I don't think think you'll

be seeing Dr. Wessely up where you are.

[florrirose]

I have ME/CFS and mito illness, I have been through similar with NHS and have kidney probs which I was not told about and loss of memory IQ etc, now the only doctor Myhill who helps ME in the UK is about to be struck off, please help support her.

The abuse on the NHS is truly shocking and horrifying, how come they can away with not listening to WHO guidance that it is an acquired organic physiological, multi systemic neurological illness

[thx1138mindlock]

What a brave woman and incredible daughters. My heart goes out to all of them. x

[carolann64]

I used to be an extremely active person. I have held some very good positions in jobs that I have worked. Infact I used to be called a workaholic. I used to love to travel to see new places too. But all of that has changed now. Now I just sit here day in and day out in pain. I can't take the tv being loud or music anymore. And yet I used to be dancer that absolutely loved music. My life sucks like this and I wouldnt wish this for anyone. I do alot of praying to God

[carolann64]

Because most of us are too sick to work!

[carolann64]

I constantly do research on the internet, looking for a cure or something to make me feel better. Ive tried supplements, herbal teas, Colloidal Silver, eating very healthy foods, Ive tried walking when I can. Not much seems to help, and there's not much help out there for us. Most places on the Internet that has a dr that seems like he can help with our illness is just after our money. And most of us suffering dont have the money to spend on expensive supplements.

[carolann64]

I have Fibromyalgia & Chronic Fatigue Syndrome. I have had it now for 14 yrs. I have been back and forth to the doctors now so many times. Some days I really feel like I'm about to die. The Dr's I get to deal with are Military docs, they just treat me like Im crazy. I have no energy, I'm housebound. I'm just waiting to die, there are members in my family that doesnt support me or believe me. My husband and my children are my only support system. But they are not drs, they can only show me love.

[Miryam050]

ME does sound horribly like polio, as Jane Colby has suggested. Why oh why does the medical profession not take it on as they did polio? I am so sorry Sophia and Lynn and their families and so many others have had to suffer so much. Human race, after so many scientific miracles, is still in the Dark Ages re so many medical conditions.

Medical profession should be ashamed at how they have mistreated these incredibly ill people. Sophia and Lynn RIP.

[bubblaboo1]

Why is the spinal cord not routinely looked at in a post mortem esp when theres no other obvious cause of death? Its a disgrace this country has become so backward in its logic and treatment of people. Roll on the XMRV research. RIP Sophia.

Thank you Criona for having the strength to continue to fight for those who struggle to find a voice.

[SANDMANCASTHISSPELL]

Everyone needs to see this video. It is so well done and explains the illness in a way we all can understand. Thank you.

[kaiako1]

I am so sorry for her family - this is the kind of abuse that the medical community can inflict on those who are most vulnerable and ill - what is the first thing they swear to uphold?

"First do no harm"

My goodness - pray I am never that vulnerable. She even had her strong mother advocating for her and it made no difference. I am shocked.

[luminescentfeeling]

Wessely, Sharpe, White, Chalder, Crawley, Hoptoff, Deary, Pinching, Findley - claim via CBT/GE an 80%cure rate in the NHS. (They could be taken to court, injected with XMRV and imprisoned and left to die for accusing Sophia of 'faulty illness beliefs). ME and even CFS, never was classified as a mental illness remember. There is no excuse. Sophia's tormentors are a disgrace to humanity. I never forget Sophia, she is always in my heart despite never meeting her. Her mum/sister share her bravery.

[Ezziotz]

Jesus christ. I'm sorry. :/ I know what it's like to have M.E but to have it to that extent? Eurgh.

[ytgkvx]

i c u

[mecfs]

Thank You SO much on the behalf of my daughter and all the other Me-patients- for sharing the chocking story of Sofia. As a mum you should have a big hug, and a huge amount and appologies because of the bad treatment to your suffering daughter. We have observed some of the same kind of disbelieves in the school-system. But thanks to hospitaldocters  in Copenhagen, my daughter is now free to stay home and recover from school, when she needs to without fearing the Authoryties.

[fogggygyrl]

Thank you for making this video Criona. I am so sorry you lost your lovely Sophia. It's just criminal. Keep fighting the good fight. All of us with ME/CFS are so grateful to you and your family. Prayers to you.

[PostHuman2113]

Wesseley should be humiliated.

In time....tick-tock....tick-tock­...

:D

[dizzit78]

Simon Wessely should be ashamed to call himself a doctor.

[MultiCherryLips]

that it is going to happen when all in the world have fibromialgia from doctors to scientists, finally they would begin think that the disease is real and non mental ilnesss, so that there is as much people with fibromialgia is an epidemic yet??? or pandemic??? is milion people around of the world....

[MultiCherryLips]

in Europe have 15 milion people with fibromialgya and fatige cronic,USA have 10 milion people, in Spain 3 milion people, in Mexico 14 milion people and the CIENTIFICS , DOCTORS,AND LABORATORY NO MADE A CURE ...WHY... IS A LOT PEOPLE WITH THIS DISSEASE :( CAN MOVE THE ASSS!!!!

[MultiCherryLips]

i was study art, and i cant work, i live in caracas, venezuela , the goverment no give me a help, the hospitals here no work, the social security is bad, and i pay tax and i no have nothing, and the doctors private is a lot expensive, the doctors no have etic for the patience only wanna is money, and the psiquiatrics here are crazy killers or put crazy at the patiences a lot pills and pills, i have citizen italian, i call at emercy one day at the consulate of italy here for help

[MultiCherryLips]

i have fibromialgy and fatigue cronic and i feel isolation, sadness, is pain, i have 50 tenders poits hurt me, and fatige, and the doctors in venezuela are shit, only think in the money i was eat a lot pills and never tell me i have fibromialgy, here no esist a center or hospital for help me i no have security social, i cant work, and my friends left me because i have this sick, and my family no help me, no understand the sick, only my father help me

[luminescentfeeling]

This video should be played to Simon Wessely, Trudie Chalder, Peter White and Michael Sharpe before they are sentenced in the high court for murder of ME patients on national TV, but sadly they are protected by the British Government under the illusion that they are innocent 'doctors' want to help people.

Wessely calls ME patients 'disgusting', and is in charge of blocking research by producing endless disinformation.

None of the Wessely School are innocent they are all guilty as charged.

[ImHollieWood]

Criona, you are an amazing woman and i support you 1000%. Well done, words cannot describe how much i feel for you.

Im 15 with M.E/CFS and was taken into the emergency hospital and told 'I was making it up to get attention' and anytime i tried to fight to get diagnosed they just looked into the mental health side of things.

Luckily im diagnosed now but treatment and care is still a struggle as people choose not to believe that M.E is real, its painful + its depressing.

Good luck xxxx

[GBCTwo]

I've looked at a number of videos and resulting comments regarding the topic of M.E. and being slightly involved of the world of M.E. campaigning, it's always apparent to me that M.E. is being used as a dustbin diagnosis and that there is far too much mental health input. In the light of the NICE CFS/ME guidelines challenge failure, people cannot "hope" for something to happen - the change has to be initiated from patients and carers. Unfortunately, that is not happening IMHO.

[taniaaust1]

Sophia will not be forgotten... her fight goes on for so many of us.

[portreekyd]

This is horrific. I have fibromyalgia and friends and family think I am lazy and I am not ryinghard enough. Why do others think because you do not display visual signs of illness that it is "all in the head." It's a disgrace. Anyone who needs help try Mickel Therapy.

[Aeryn87]

Fantastic documentry, I heard of Sophia through another M.E friend of mine who sadly died. I am so sorry to hear everything she went through and Criona, I am sorry for your loss.

I too am an m.e sufferer and at the moment I am severely effected (although not as bad as Sophia). It was good to see this and find out more about it, I did see the website but unable to read it myself as not able to read that much but hubby has.

[yorkandpomona]

this is not a mental illness this is a real body thing....im so sorry about yr loss really

[yorkandpomona]

Chronic fatigue syndrome (CFS) is the most common name[1] given to a poorly understood, variably debilitating disorder or disorders of uncertain causation. It is also commonly known as myalgic encephalomyelitis or ME.

[M0rrigan1]

I really feel for those who suffer from this disease. I hope the world soon will see what MS is about. It is a joke that doctors and nurses can keep their job, when not even listening to what the patient says.. Bless you

[Carrigon]

Thanks for sharing this video. I only hope that one day, people will realize just how serious this disease really is. No one should ever have to suffer and lose their life the way Sophia did.

I've had CFIDS for eighteen years. After my mother died two years ago, my relatives wanted to basically do what was done to Sophia to me. But I was very lucky and I got out of that situation. People can be very cruel and ignorant. I only hope that one day, we will get validation and justice.

[madooka]

I am very sad for your loss. I had ME/CFS (when I still lived in England) 11 years ago. I was totally disabled for 5 years. I was very, very fortunate to have the most fantastic GP in Surrey who never gave up on me. I am back now to about 75% health. I DO believe that depression plays a very large part in the illness. I wish all doctors could understand this.

[angelsolace]

Thank you so much for posting this video. Its heartbreaking. Mrs Mirza is such a brave strong woman. Her daughter Sophia will not be forgotten. x

[firecat64]

you are an inspiration criona

I am so sorry for your loss

[mrskaykins]

I thought she died of dehydration as she wouldn't drink?

[Maverickcomedygirl]

Wouldn't drink? 'Couldn't' and 'wouldn't' are two entirely different things. My sister Sophia died of ME/CFS and it is this type of ignorance that helps keep this disease in the clutches of the mental health sector. ME is a PHYSICAL disease. 'Wouldn't' implies Sophia had a choice, but she had no choice about her illness and implying that she brought about her own suffering and death because she 'wouldn't ' do certain things is entirely WRONG and very insensitive.

[mrskaykins]

I never said that at all and I apologise if you misinterpreted it. that way. I am sorry for your loss. I had ME myself for 19 years.

[Bluebottle83]

She died of ME(the serious neurological illness you insist can be cured by the positive thinking & self hypnosis scam Lightning Process)

unequivocal inflammatory changes affecting the special nerve cell collections (dorsal root ganglia) that are the gateways (or station) for all sensations going to brain through spinal cord. The changes of dorsal root ganglionitis seen in 75% of Sophias spinal cord were very similar to that seen during active infection by herpes viruses (such as shingles).

[LadyInRed1999]

Thank you Criona for having the courage to share your feelings with the world about what must be such a painful issue for you. Hopefully it is efforts such as this which will aid the progress of getting ME recognised for the debilitating physical condition it is, and therefore help more people in need and perhaps save innocent lives in future. Thank you again.

[sohale5]

Any video of her?

[StopUnumNow]

Many thanks for posting this video. I was very sorry to read about your daughter's experience and I truly admire your courage and firm stance taken on this serious matter.

Some of the trends we are currently witnessing are reminiscent of very dark periods in history. Those who choose to ignore the serious historical lessons are destined to repeat some truly awful mistakes.

I sincerely hope the upcoming Judicial Review in London, is a huge success for ME sufferers located throughout the UK..

[Silvermaneuk]

I have ME, I was diagnosed in 2006, have had numerous tests which have shown small things going on, in a neurological sense, like i have an upset in my balance center and lesions on the brain. Other than pain relief for all my pain problems they have never treated me for anything. I feel like a prisoner by this illness. like many others I was very active and very very happy before i was ill and I desperatly want to get well and get out of my prison. I have put this on my facebook!!

[AHummingbirdsGuide]

*crying* That was so emotional to watch.

THANK YOU Criona, for everything you are doing. There aren't words....:)

The message must get out there that M.E. is a distinct neurological disease fery similar to MS. It is not fatigue, chronic fatigue or 'CFS.'

It isn't a medically unexplained fatigue state as 'CFS' is... it is also not a financially motivated artificial disease construct as 'CFS' is.

We must force the abandonment of 'CFS' , and renew the legitimate science/info on M.E.

[landofhealth]

thank you criona speakin out about how serious m.e is . I met you a few years ago at a sussex m.e conference i think she may have been sectioned then or maybe just before, but i really felt for u. RIP sophia.

i have severe m.e but cos i also have mental health probs my m.e is blamed on my mental health.. i got glandular fever & never recovered, i am housebound, mostly bedbound and noone to help me or care for me. m.e is a neurological illness NOT a psychiatric one..hugs, blue x

[s5044726]

Thankyou Criona

[Bluebottle83]

Well done Criona, you are one very brave lady to continue to campaign in Sophie's memory. The way Sophie was treated, and the fact that the professionals involved were never brought to account, is an absolute scandal.The way people with the serious neurological illness M.E. sufferers continue to be treated as malingerers is appalling.

May your beautiful daughter rest in peace after so much suffering and mistreatment from those paid to help her.

[theonlyfluffyone]

Thank you for this - We need more understanding and help. I am bedbound and unable to fight but if more people speak out maybe the isolation will be less.Take care, Chris x

[sproggled]

Thanks so much for this insightful video to help educate people about this devastating illness JX

[squara39]

very informative and people need to see this. i have m.e. for three years and its taken my life away iam a single mum of 3 and gone from being fit healthy and active to beieng house bound and sometimes bed bound, unable to do menila tasks without seriously suffering afterwarsds.this is a real physical illness which can devastate patients and their families. thank you for sharing this. your an amazing woman xx

[maxinebasset]

An inspirational video. As mother of a son and daughter. both of whom have ME following chemical poisoning, I have seen the pressure that the medical profession (with a few notable exceptions) bring to bear to convince those diagnosed that their problems have a psychiatric cause rather than a biomedical one.

[riverlaken]

@maxinebasset

Wow, I had chemical poisoning from moth balls at work, 8 years ago and now I suffer too from severe M.E.

I am so upset over the way, Sophia was treated and moved by her mother's fight for justice, that is well deserved!! "ROCK ON" Criona

[bibadybobadyboo]

Thankyou Criona for your excellent video. Until I fell ill with ME, I had not realised the cruelty and mistreatment that exsists in the medical profession. This illness destroys lives and families. Too many are dying, CBT and GET clinics will never cure ME, Money should be spent on proper medical research to find a cure and treatment for this devastating illness. thankyou again Criona for sharing Sophia's story.

[luminescentfeeling]

Simply brilliant.

From tragedy will come justice for Sophia.

No surrender to sadistic cruel people.

[Meezermagic]

You are a brave lady, Criona. I am so sorry you lost your daughter the way you did, and I hope her sad death and your testimony will help to change things so that other families won't have to go through the torture that yours did. I wish you all the best in making Sophia's story known.

[MaverickMiracle]

Please leave a comment on this video so we can garner as much support as possible to help change the treatment of ME/CFS patients.