Back in october I wrote into Panorama at length &I posted a more concise version the main letter on a facebook group so anyone who wanted to could use it to easily write in.
Recently it's been getting more attention &people requesting a start a facebook group about getting ME on TV. I did this hoping it would inspire folks to write in to all sort of TV shows around the world and created a discussion on the Panorama UK subject.
However, everyone seems to be getting rather excited &they want the Panorama page NOW!!!
I on the other hand do not want to be responsible for such a page until we've got our ideas together properly. The last thing I want is to be responsible for getting a Programme on air that then gives air time to wessely or his views!
My correspondance with Panorama
From:
To: panorama@bbc.co.uk
Subject: Confidential
Date: Wed, 14 Oct 2009 21:29:11 +0100
I would like very much for panorama to investigate the plight of people living with ME in the UK. Although, we have been campaigning for recognition for this devastating illness for many years little has changed.
Thankfully, new research from america is currently giving new hope to sufferers and their families and ME may one day be treatable using anti retro-viral drugs in a similar way to HIV/AIDS is treated.
I feel thisvital new research is a chance to redress the balance and change public opinion once and for all to accepting ME as a serious contagious neurological disease that can effect anyone of any age, race or gender.
I have attached a file which contains what I believe to be the main issues that need to be addressed and also a seperate section which describes my personal experiences as an ME sufferer.
Jan
Please feel free to contact me through this email address
Attachment Letter:
I have long been hoping that Panorama would tackle head on the plight of people with Myalgic Encephalomyelitis (ME) in the UK. I understand there was a panorama special 10 years ago which tackled the dangerous use of forced Graded Exercise Therapy (GET) on children with ME and how parents were even threatened with having their children taken from them if they did not comply with this regime – Although I have only heard this through friends as unfortunately I did
not see the programme myself.
The main points that I think would be well worth highlighting are as follows:
- Most importantly please can we put to bed once and for all the idea that ME is in
anyway psychosomatic. We need a full stop.
- That ME is a debilitating neurological disease. FACT.
It has been officially recognised by the World Health Organisation since 1969 as a
distinct organic neurological disorder.
- The nature of the disease.
There are many misconceptions about the very nature of ME. The most prevalent being the notion that, in the majority of cases the overwhelming symptom is one of fatigue. This has permeated the thinking about this disease so profusely that it has long been dubbed “Chronic Fatigue Syndrome” a name that unfortunately seems to have stuck.
In reality fatigue is only one distinct part of this illness. Most patients present with flu like symptoms and a variety of cognitive and neurological disturbances.
I myself have had many phases of paralysis where I've been unable to move or communicate, to this day I still use a walking stick when out to support myself and stop me from falling over due to my lack of balance Bellow is a long list of ME symptoms.
Common symptom information as taken from http://www.ahummingbirdsguide.com/themesymptomlist.htm follows:
“Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and
digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional liability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.
Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (e.g. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E.”
- People with severe ME and fatalities
Many sufferers are completely bed bound, need tube feeding and 24hour personal care. The illness can also prove fatal. Sophia Mirza died from ME in November 2005. The following is taken from the family website http://www.sophiaandme.org.uk/ :
“Officially, Sophia had M.E. since 1999. She was offered 'treatment' in an M.E. clinic. She asked me to research it. I spoke to some ex-patients, too frightened to have their names used, who said it was run on the lines of mental health. On phoning the clinic I spoke to their Senior Occupational Therapist who had visited Sophia and had done the assessment on her. She eventually told me that those with severe M.E. regressed to their original state of ill-health. Given such a negative prognosis, Sophia refused this option; for this reasonable decision she was sectioned in a mental hospital in 2003.”
Unfortunately by the time Sophia's family had successfully fought to have her released her health had deteriorated and soon after her release she died. This was widely reported as being the first official known death from ME. But this is not the case other cases of death from ME are highlighted at
http://www.ahummingbirdsguide.com/wmarwillinquest.htmthis is an excerpt from the site:
“It was in 1957 that Dr Andrew Lachlan Wallis reported the post-mortem histopathology on a female from Cumbria who had died of ME; the report can be found in Wallis’ Doctoral Thesis (held at the University of
Edinburgh............... Perhaps the best known ME death is that of 19-year old Alison Hunter in Australia, who died in 1996 from severe ME, suffering seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her throat, horrendous neurological problems and overwhelming infection, having courageously fought ME for ten years.”
Also there is the following site which lists as a memorial people who have died directly from ME and through complications caused my having ME. (They do also include ME sufferers who have died from other causes including suicide and assisted suicide) http://www.ncf-net.org/memorial.htmAn excerpt from this site:
“Kathryn Blaine Anderson, died on September 10, 2004 at age 40 after just six years of suffering greatly from ME/CFIDS, a disease that, in many physician's minds, doesn't exist. Kathryn's worst symptom of the illness was multiple chemical sensitivity which made the disease so much more challenging. In the end, just swallowing became impossible. Like most patients, Kathryn found that she was much more knowledgeable about her illness than most physicians and, of course, many who had no answers told her that her suffering was all in her head.....”
-Mis-treatment of ME patients by health care professionals The case of Sophia Mirza is not an isolated one, there have been many cases of people being treated
terribly by healthcare professionals including being forcibly removed from their families kept in isolation and forced to exercise. As described in this you tube video
http://www.youtube.com/watch?v=cDeu_OlMivU
- Why ME patients still DON'T get routinely referred to a Neurologist.
It is a neurological illness after all. It took ten years for me to get to see a neurologist, many ME sufferers will never see one. They are fobbed off with pain killers and psychologists.
-The lack of biomedical research into ME in the UK.
Instead for many years all government funding has gone into inappropriate so called “management” of the illness with GET and CBT -this is unforgivable. There has long been a campaign within the ME community to reverse this worrying trend and we have been lobbying the government to fund biomedical research, signing EDMs and Petitions to this effect with little or no success. I believe the main reason for this is simply that not enough people are seen to die directly from ME and therefore it is swept under the carpet and ignored. As well as the perceived public disbelief about
the condition which makes it harder to get our voices heard.
-Retrovirus possible cause for ME
The recent research from The Whittemore Peterson Institute for Neuro Immune Disease in Nevada.
This is very exciting for people with ME and other neurological diseases. It links the retrovirus XMRV to ME and gives hope for possible future treatment of the condition with anti-retroviral drugs, in a similar way to the way HIV/AIDS is treated.
Here's a link to an in depth interview with Annette Whittemore, president and founder of the Whittemore Peterson Institute and Judy Mikovits, Ph.D., director of research for WPI http://nevadanewsmakers.com/video/default.asp?showID=938
And an informative radio interview with Dr. Daniel Peterson, Medical Director of the Whittemore Peterson Institute http://www.npr.org/templates/story/story.php?storyId=113650222
-The stigma people with ME have had for decades and how detrimental this has been to peoples health and well being. If people tell you often enough it's all in your head, eventually you start to believe it. Coming from a doctor it is completely devastating.
-The great difficulty people with ME have in accessing benefits and dealing with
doctors.
I have direct experience of being patronised and blamed for my own condition by a consultant who was suppose to be acting in my best interest. I have also been turned down for Disability Living Allowance despite being severely affected at the
time and in need of constant care. This is not uncommon. I was too unwell to take my case to tribunal. Thankfully I hear many of those who have been to tribunal got their DLA in the end but so many of us are just not capable of this and it is wrong to routinely put severely ill people through this. If they don't believe you what chance do you have? The DLA form is also incompatible with ME. The questions asked do not show the nature of the illness and it is very hard for a patient to get the severity of their illness across in it. There should be a review and a more appropriate way of measuring disability in ME put into use.
-In conclusion
Please help to empower ME sufferers throughout the UK. We all need to know our rights. We need to once and for all dismiss the ridiculous opinions of people, who have very little understanding into the illness, that it is in anyway related to their mental health. People become anxious and or depressed due to this chronic illness, as with any serious illness. And helping people overcome these difficulties is important and will no doubt improve their quality of life overall. However, it is a completely separate issue to the illness itself and should be treated as such.
I feel a program of this nature is long overdue, and that the recent advances in scientific research provide an excellent back drop for a new in depth report into the lives of people who are battling ME in the UK today. ME is a real physical illness which has comparisons with MS and HIV/AIDS this needs to be brought to the attention of the general public.
For more information I have included some details below of my personal experience with ME. I am happy to be contacted at this email address with regards any of the information I have provided.
Thank you for your time
Jan
My personal story:
My name is Jan. I was diagnosed with ME in 1999 by my GP. I was told from my blood tests I'd had a persistent viral infection similar to glandular fever (but not glandular fever) and that this had probably been picked up from vermin when I was wind surfing in the Scaling Dam reservoir (located on the A171 between Guisborough and Whitby). I also presented with an enlarged liver.
My GP said the diagnosis meant that my body was taking longer than normal to recover from the virus and that it could take a few months to recover but that for some people it can take even longer. I was 17 and sure I would be in the quick to recover category, I am still suffering ten years on.
When I was diagnosed I had been poorly for more than six months and had endless rounds of blood tests which always came back negative. It was “a mystery”, I had no chance of getting any advice or support as nobody knew what was wrong. Unfortunately, this is also the experience that the overwhelming majority of ME sufferers are still faced with to this day. The nature of my symptoms were predominantly flu like, but I was baffled by the unpredictable nature of my condition and the extreme range and severity of symptoms.
As far as I was concerned I either had the flu -meaning I would be laid out completely for weeks and then fully recover OR I didn't in which case -I should be well and able to continue my life as normal.
In reality my symptoms varied greatly from hour to hour and day to day. Although I never felt well, on a good day I'd manage to drag myself to college for a few hours, sometimes managing several consecutive days. This would give me hope I was getting better, then I'd once again be so poorly I couldn't get out of bed.
I have been poorly everyday since, but the hardest thing to deal with has been the stigma and disbelief that comes with being diagnosed with ME.
I was referred to Dr Brendan McCarron a consultant specialising in Infectious Diseases at James Cook University Hospital in middlesbrough immediately on my diagnosis in 1999. I had half a dozen appointments with him before realising that however many times I went to see him the message was going to be the same.
While he examined me, if I winced he would say “Oh that
didn't hurt!”. Not once did he ask me how I was, instead he repeatedly TOLD me I was getting better. I finally accepted he wasn't going to be any help to me whatsoever and had very little insight into my condition. I stopped my appointments, the exertion of hospital visits and the demoralising effect they had on me had become too much.
Last year however I had a severe relapse and reluctantly agreed to be re-referred to this consultant. I was severely affected at this time and the car journey itself was an ordeal. However, I was hopeful that all these years later and now I was so obviously physically affected I would at last be treated respectfully. I was wrong. The consultant reacted very badly to me being in a wheel chair and wearing sunglasses. He told me I shouldn't wear them as it's a way of hiding away from the world.
If I'd been able to respond properly at the time I would have told him that I don't routinely wear dark glasses, I'd had them on all of two minutes as the hospital lighting in the waiting room was hurting my eyes. I was horrendously unwell and it was the one thing I was able to do to reduce my own suffering. I could not respond when he first greeted me. It was all I could do to stay up right, I had tremors in both my arms, and I couldn't think clearly or form sentences, speech was very difficult. However, I needn't have worried about trying to communicate because once again he was only interested in the sound his own voice. Some of the highlights were him demanding I sit up straight as if I was a naughty child slouching on purpose, he demanded this repeatedly until I finally managed to lift my head -mainly out of anger! To this day I wonder if he would have continued indefinitely if I had not managed to do so. Other pearls of wisdom were “Don't be a victim” , “We
all get into bad habits from time to time” as if in some way my behaviour was causing my condition and he must have said twenty times “It's just like training for a marathon”. I came away with strict instructions to make myself get up before 9am every morning without fail, he seemed to think I should manage this easily.
I had been full of hope about this appointment and was devastated by the way I was treated. I was too unwell (and also very angry and upset) to face going back. I seriously considered making a formal complaint against him for the way I was treated but even this was impossible as I was just too unwell. I was so angry and knew there was no chance of him taking me seriously if I was too emotional when writing to him. Instead my mum wrote to him saying we were disappointed with
the appointment and asking for help.
COPY OF LETTER SENT
07.12.08
From
<Deleted>
To
Dr <Deleted>
The James Cook University Hospital
Re – Ja
Dear Dr <Deleted>
Jan has had to postpone her appointment to see you due to being extremely unwell. Travelling makes her migraine symptoms worse and she becomes travel sick even on short journeys. The consultation with you in October rather than being helpful, was quite the opposite.
You witnessed Jan having uncontrollable twitching/jumping muscles and therefore finding it difficult to sit up straight. You didn't seem to understand these symptoms, do you not see this in other ME patients? Do you think Jan may need to have this investigated by another consultant, perhaps a neurologist?
Jan's latest relapse is very worrying and we are desperate to know what services you plan to implement.
Regards
<Deleted>
Below is the response we received:
BM/JC/D221365
23rd December 2008
(Full Address)
Dear
Thank you for your letter dated 7th December 2008 regarding Jan and her Chronic Fatigue Syndrome.
We do not have facilities available for cognitive behavioural therapy, which may be of benefit to Jane but you could consult your GP to see if they have this facility within their practice. If you are seeking Neurological assessment this will also have to be done by your GP.
I hope this is of benefit
Yours sincerely
<Deleted>
Consultant Physician
I should have known better than to expect anything other than being told to see a shrink!
At this point I was virtually bed ridden and needed lots of help with personal care. I could no longer deny I was very poorly as I was obviously becoming a burden on my family. I felt I had no choice but to apply for Disability Living Allowance. My mum filled the forms in on my behalf as I was too poorly to be able to tackle it myself. My application was refused, I had the chance to go to a tribunal to argue my case but there was no chance of me being well enough to do this! I had to just suck it up, and put my health first.
Thankfully at this point my GP stepped in and on the basis of the severe tremors I was experiencing and the general decline of my health he referred to me a consultant neurologist. I was very nervous about this appointment and how I would be treated at the hospital. I knew he would be treating people with all sorts of serious neurological diseases such as MS and Parkinsons. How would he react to me, would he think I'm a malingerer taking up valuable NHS resources? I was very
pleasantly surprised to find the opposite was true.
The neurologist I saw was an older gentlemen who admitted that when he was at medical school he had been taught that ME was not a real illness. But that he had since seen many ME patients in his clinic and knew it was a very real physical illness. He took the time to examine me carefully and to my delight asked me how I was being affected by my ME. He said they were tests he could do and medications he could put me on. But as by this time I had already started to improve slowly after
my relapse he didn't want to put me through these tests unnecessarily. I could have chosen to have them done but I was still very poorly and did not think it would be worth exacerbating my condition. He asked to see me in 3 months as long as I continued to improve but that I should see him immediately if I have any further problems. I kept to this appointment and was assessed again, my health had continued to improve in the 3 month interval and so I was discharged. However, if I
ever wish to see him again I can make an appointment at any time which is of great comfort to me.
Thankfully since my last appointment my health has continued to improve. For the first time I now feel well enough to express and share my thoughts regards this devastating illness.
Jan
Recently it's been getting more attention &people requesting a start a facebook group about getting ME on TV. I did this hoping it would inspire folks to write in to all sort of TV shows around the world and created a discussion on the Panorama UK subject.
However, everyone seems to be getting rather excited &they want the Panorama page NOW!!!
I on the other hand do not want to be responsible for such a page until we've got our ideas together properly. The last thing I want is to be responsible for getting a Programme on air that then gives air time to wessely or his views!
My correspondance with Panorama
From:
To: panorama@bbc.co.uk
Subject: Confidential
Date: Wed, 14 Oct 2009 21:29:11 +0100
I would like very much for panorama to investigate the plight of people living with ME in the UK. Although, we have been campaigning for recognition for this devastating illness for many years little has changed.
Thankfully, new research from america is currently giving new hope to sufferers and their families and ME may one day be treatable using anti retro-viral drugs in a similar way to HIV/AIDS is treated.
I feel thisvital new research is a chance to redress the balance and change public opinion once and for all to accepting ME as a serious contagious neurological disease that can effect anyone of any age, race or gender.
I have attached a file which contains what I believe to be the main issues that need to be addressed and also a seperate section which describes my personal experiences as an ME sufferer.
Jan
Please feel free to contact me through this email address
Attachment Letter:
I have long been hoping that Panorama would tackle head on the plight of people with Myalgic Encephalomyelitis (ME) in the UK. I understand there was a panorama special 10 years ago which tackled the dangerous use of forced Graded Exercise Therapy (GET) on children with ME and how parents were even threatened with having their children taken from them if they did not comply with this regime – Although I have only heard this through friends as unfortunately I did
not see the programme myself.
The main points that I think would be well worth highlighting are as follows:
- Most importantly please can we put to bed once and for all the idea that ME is in
anyway psychosomatic. We need a full stop.
- That ME is a debilitating neurological disease. FACT.
It has been officially recognised by the World Health Organisation since 1969 as a
distinct organic neurological disorder.
- The nature of the disease.
There are many misconceptions about the very nature of ME. The most prevalent being the notion that, in the majority of cases the overwhelming symptom is one of fatigue. This has permeated the thinking about this disease so profusely that it has long been dubbed “Chronic Fatigue Syndrome” a name that unfortunately seems to have stuck.
In reality fatigue is only one distinct part of this illness. Most patients present with flu like symptoms and a variety of cognitive and neurological disturbances.
I myself have had many phases of paralysis where I've been unable to move or communicate, to this day I still use a walking stick when out to support myself and stop me from falling over due to my lack of balance Bellow is a long list of ME symptoms.
Common symptom information as taken from http://www.ahummingbirdsguide.com/themesymptomlist.htm follows:
“Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and
digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional liability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.
Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (e.g. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E.”
- People with severe ME and fatalities
Many sufferers are completely bed bound, need tube feeding and 24hour personal care. The illness can also prove fatal. Sophia Mirza died from ME in November 2005. The following is taken from the family website http://www.sophiaandme.org.uk/ :
“Officially, Sophia had M.E. since 1999. She was offered 'treatment' in an M.E. clinic. She asked me to research it. I spoke to some ex-patients, too frightened to have their names used, who said it was run on the lines of mental health. On phoning the clinic I spoke to their Senior Occupational Therapist who had visited Sophia and had done the assessment on her. She eventually told me that those with severe M.E. regressed to their original state of ill-health. Given such a negative prognosis, Sophia refused this option; for this reasonable decision she was sectioned in a mental hospital in 2003.”
Unfortunately by the time Sophia's family had successfully fought to have her released her health had deteriorated and soon after her release she died. This was widely reported as being the first official known death from ME. But this is not the case other cases of death from ME are highlighted at
http://www.ahummingbirdsguide.com/wmarwillinquest.htmthis is an excerpt from the site:
“It was in 1957 that Dr Andrew Lachlan Wallis reported the post-mortem histopathology on a female from Cumbria who had died of ME; the report can be found in Wallis’ Doctoral Thesis (held at the University of
Edinburgh............... Perhaps the best known ME death is that of 19-year old Alison Hunter in Australia, who died in 1996 from severe ME, suffering seizures, paralysis, gastrointestinal paresis, heart damage, massive ulceration to her throat, horrendous neurological problems and overwhelming infection, having courageously fought ME for ten years.”
Also there is the following site which lists as a memorial people who have died directly from ME and through complications caused my having ME. (They do also include ME sufferers who have died from other causes including suicide and assisted suicide) http://www.ncf-net.org/memorial.htmAn excerpt from this site:
“Kathryn Blaine Anderson, died on September 10, 2004 at age 40 after just six years of suffering greatly from ME/CFIDS, a disease that, in many physician's minds, doesn't exist. Kathryn's worst symptom of the illness was multiple chemical sensitivity which made the disease so much more challenging. In the end, just swallowing became impossible. Like most patients, Kathryn found that she was much more knowledgeable about her illness than most physicians and, of course, many who had no answers told her that her suffering was all in her head.....”
-Mis-treatment of ME patients by health care professionals The case of Sophia Mirza is not an isolated one, there have been many cases of people being treated
terribly by healthcare professionals including being forcibly removed from their families kept in isolation and forced to exercise. As described in this you tube video
http://www.youtube.com/watch?v=cDeu_OlMivU
- Why ME patients still DON'T get routinely referred to a Neurologist.
It is a neurological illness after all. It took ten years for me to get to see a neurologist, many ME sufferers will never see one. They are fobbed off with pain killers and psychologists.
-The lack of biomedical research into ME in the UK.
Instead for many years all government funding has gone into inappropriate so called “management” of the illness with GET and CBT -this is unforgivable. There has long been a campaign within the ME community to reverse this worrying trend and we have been lobbying the government to fund biomedical research, signing EDMs and Petitions to this effect with little or no success. I believe the main reason for this is simply that not enough people are seen to die directly from ME and therefore it is swept under the carpet and ignored. As well as the perceived public disbelief about
the condition which makes it harder to get our voices heard.
-Retrovirus possible cause for ME
The recent research from The Whittemore Peterson Institute for Neuro Immune Disease in Nevada.
This is very exciting for people with ME and other neurological diseases. It links the retrovirus XMRV to ME and gives hope for possible future treatment of the condition with anti-retroviral drugs, in a similar way to the way HIV/AIDS is treated.
Here's a link to an in depth interview with Annette Whittemore, president and founder of the Whittemore Peterson Institute and Judy Mikovits, Ph.D., director of research for WPI http://nevadanewsmakers.com/video/default.asp?showID=938
And an informative radio interview with Dr. Daniel Peterson, Medical Director of the Whittemore Peterson Institute http://www.npr.org/templates/story/story.php?storyId=113650222
-The stigma people with ME have had for decades and how detrimental this has been to peoples health and well being. If people tell you often enough it's all in your head, eventually you start to believe it. Coming from a doctor it is completely devastating.
-The great difficulty people with ME have in accessing benefits and dealing with
doctors.
I have direct experience of being patronised and blamed for my own condition by a consultant who was suppose to be acting in my best interest. I have also been turned down for Disability Living Allowance despite being severely affected at the
time and in need of constant care. This is not uncommon. I was too unwell to take my case to tribunal. Thankfully I hear many of those who have been to tribunal got their DLA in the end but so many of us are just not capable of this and it is wrong to routinely put severely ill people through this. If they don't believe you what chance do you have? The DLA form is also incompatible with ME. The questions asked do not show the nature of the illness and it is very hard for a patient to get the severity of their illness across in it. There should be a review and a more appropriate way of measuring disability in ME put into use.
-In conclusion
Please help to empower ME sufferers throughout the UK. We all need to know our rights. We need to once and for all dismiss the ridiculous opinions of people, who have very little understanding into the illness, that it is in anyway related to their mental health. People become anxious and or depressed due to this chronic illness, as with any serious illness. And helping people overcome these difficulties is important and will no doubt improve their quality of life overall. However, it is a completely separate issue to the illness itself and should be treated as such.
I feel a program of this nature is long overdue, and that the recent advances in scientific research provide an excellent back drop for a new in depth report into the lives of people who are battling ME in the UK today. ME is a real physical illness which has comparisons with MS and HIV/AIDS this needs to be brought to the attention of the general public.
For more information I have included some details below of my personal experience with ME. I am happy to be contacted at this email address with regards any of the information I have provided.
Thank you for your time
Jan
My personal story:
My name is Jan. I was diagnosed with ME in 1999 by my GP. I was told from my blood tests I'd had a persistent viral infection similar to glandular fever (but not glandular fever) and that this had probably been picked up from vermin when I was wind surfing in the Scaling Dam reservoir (located on the A171 between Guisborough and Whitby). I also presented with an enlarged liver.
My GP said the diagnosis meant that my body was taking longer than normal to recover from the virus and that it could take a few months to recover but that for some people it can take even longer. I was 17 and sure I would be in the quick to recover category, I am still suffering ten years on.
When I was diagnosed I had been poorly for more than six months and had endless rounds of blood tests which always came back negative. It was “a mystery”, I had no chance of getting any advice or support as nobody knew what was wrong. Unfortunately, this is also the experience that the overwhelming majority of ME sufferers are still faced with to this day. The nature of my symptoms were predominantly flu like, but I was baffled by the unpredictable nature of my condition and the extreme range and severity of symptoms.
As far as I was concerned I either had the flu -meaning I would be laid out completely for weeks and then fully recover OR I didn't in which case -I should be well and able to continue my life as normal.
In reality my symptoms varied greatly from hour to hour and day to day. Although I never felt well, on a good day I'd manage to drag myself to college for a few hours, sometimes managing several consecutive days. This would give me hope I was getting better, then I'd once again be so poorly I couldn't get out of bed.
I have been poorly everyday since, but the hardest thing to deal with has been the stigma and disbelief that comes with being diagnosed with ME.
I was referred to Dr Brendan McCarron a consultant specialising in Infectious Diseases at James Cook University Hospital in middlesbrough immediately on my diagnosis in 1999. I had half a dozen appointments with him before realising that however many times I went to see him the message was going to be the same.
While he examined me, if I winced he would say “Oh that
didn't hurt!”. Not once did he ask me how I was, instead he repeatedly TOLD me I was getting better. I finally accepted he wasn't going to be any help to me whatsoever and had very little insight into my condition. I stopped my appointments, the exertion of hospital visits and the demoralising effect they had on me had become too much.
Last year however I had a severe relapse and reluctantly agreed to be re-referred to this consultant. I was severely affected at this time and the car journey itself was an ordeal. However, I was hopeful that all these years later and now I was so obviously physically affected I would at last be treated respectfully. I was wrong. The consultant reacted very badly to me being in a wheel chair and wearing sunglasses. He told me I shouldn't wear them as it's a way of hiding away from the world.
If I'd been able to respond properly at the time I would have told him that I don't routinely wear dark glasses, I'd had them on all of two minutes as the hospital lighting in the waiting room was hurting my eyes. I was horrendously unwell and it was the one thing I was able to do to reduce my own suffering. I could not respond when he first greeted me. It was all I could do to stay up right, I had tremors in both my arms, and I couldn't think clearly or form sentences, speech was very difficult. However, I needn't have worried about trying to communicate because once again he was only interested in the sound his own voice. Some of the highlights were him demanding I sit up straight as if I was a naughty child slouching on purpose, he demanded this repeatedly until I finally managed to lift my head -mainly out of anger! To this day I wonder if he would have continued indefinitely if I had not managed to do so. Other pearls of wisdom were “Don't be a victim” , “We
all get into bad habits from time to time” as if in some way my behaviour was causing my condition and he must have said twenty times “It's just like training for a marathon”. I came away with strict instructions to make myself get up before 9am every morning without fail, he seemed to think I should manage this easily.
I had been full of hope about this appointment and was devastated by the way I was treated. I was too unwell (and also very angry and upset) to face going back. I seriously considered making a formal complaint against him for the way I was treated but even this was impossible as I was just too unwell. I was so angry and knew there was no chance of him taking me seriously if I was too emotional when writing to him. Instead my mum wrote to him saying we were disappointed with
the appointment and asking for help.
COPY OF LETTER SENT
07.12.08
From
<Deleted>
To
Dr <Deleted>
The James Cook University Hospital
Re – Ja
Dear Dr <Deleted>
Jan has had to postpone her appointment to see you due to being extremely unwell. Travelling makes her migraine symptoms worse and she becomes travel sick even on short journeys. The consultation with you in October rather than being helpful, was quite the opposite.
You witnessed Jan having uncontrollable twitching/jumping muscles and therefore finding it difficult to sit up straight. You didn't seem to understand these symptoms, do you not see this in other ME patients? Do you think Jan may need to have this investigated by another consultant, perhaps a neurologist?
Jan's latest relapse is very worrying and we are desperate to know what services you plan to implement.
Regards
<Deleted>
Below is the response we received:
BM/JC/D221365
23rd December 2008
(Full Address)
Dear
Thank you for your letter dated 7th December 2008 regarding Jan and her Chronic Fatigue Syndrome.
We do not have facilities available for cognitive behavioural therapy, which may be of benefit to Jane but you could consult your GP to see if they have this facility within their practice. If you are seeking Neurological assessment this will also have to be done by your GP.
I hope this is of benefit
Yours sincerely
<Deleted>
Consultant Physician
I should have known better than to expect anything other than being told to see a shrink!
At this point I was virtually bed ridden and needed lots of help with personal care. I could no longer deny I was very poorly as I was obviously becoming a burden on my family. I felt I had no choice but to apply for Disability Living Allowance. My mum filled the forms in on my behalf as I was too poorly to be able to tackle it myself. My application was refused, I had the chance to go to a tribunal to argue my case but there was no chance of me being well enough to do this! I had to just suck it up, and put my health first.
Thankfully at this point my GP stepped in and on the basis of the severe tremors I was experiencing and the general decline of my health he referred to me a consultant neurologist. I was very nervous about this appointment and how I would be treated at the hospital. I knew he would be treating people with all sorts of serious neurological diseases such as MS and Parkinsons. How would he react to me, would he think I'm a malingerer taking up valuable NHS resources? I was very
pleasantly surprised to find the opposite was true.
The neurologist I saw was an older gentlemen who admitted that when he was at medical school he had been taught that ME was not a real illness. But that he had since seen many ME patients in his clinic and knew it was a very real physical illness. He took the time to examine me carefully and to my delight asked me how I was being affected by my ME. He said they were tests he could do and medications he could put me on. But as by this time I had already started to improve slowly after
my relapse he didn't want to put me through these tests unnecessarily. I could have chosen to have them done but I was still very poorly and did not think it would be worth exacerbating my condition. He asked to see me in 3 months as long as I continued to improve but that I should see him immediately if I have any further problems. I kept to this appointment and was assessed again, my health had continued to improve in the 3 month interval and so I was discharged. However, if I
ever wish to see him again I can make an appointment at any time which is of great comfort to me.
Thankfully since my last appointment my health has continued to improve. For the first time I now feel well enough to express and share my thoughts regards this devastating illness.
Jan
