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Seem to have accidentally started a Panorama UK campaign HELP !!!!!

Discussion in 'Advocacy Projects' started by sproggle, Mar 12, 2010.

  1. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    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
  2. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    This is what I'd originally posted on Facebook:

    I have written into Panorama in great length requesting they do a Panorama Special on the plight of people living with ME in the UK. I believe the more people highlight our cause the more chance we have of this programme being made.


    Here is the link to the Panorama team
    http://news.bbc.co.uk/panorama/hi/contact_us/default.stm

    Here's an example letter people are very welcome to use as a template:

    Dear
    Panorama Team,

    I have long been hoping that Panorama would tackle head on the plight of people with Myalgic Encephalomyelitis (ME) in the UK.


    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.


    - 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.


    -Mis-treatment of ME patients by health care professionals

    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.


    - 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.

    -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.


    -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

    The DLA form is 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 ours 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.

    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.

    Link to the group I started Get ME on TV: http://www.facebook.com/group.php?v=app_2373072738&gid=397706469637#!/group.php?gid=397706469637

    I started it yesterday and got 134 members without even trying.....

    I'd love people thought's on my letter and the idea as a whole

    Thanks Jan xx
  3. Adam

    Adam *****

    Messages:
    495
    Likes:
    1
    Sheffield UK
    Hi Sproggle

    I should I call you Super Sprog?

    I admire your efforts to get Panorama to cover ME/CFS - and your success in gathering interest. Your letter was brilliant. Should get them thinking.

    Have they replied? What about the C4 investigative journalism programme - Despatches. Less pro establishment than Panorama. Might they take up the mantle?

    Once again. Great job.

    PS sorry to hear about your treatment by NHS. I, by comparison, have been lucky and had far better care (but no treatment of course).

    Adam
  4. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Wow I rather like being called Super Sprog!! :D

    To be honest I'd completely forgotten I'd even written in never mind what my letter had contained Ooops :tongue:

    I don't even know if it was read. I got an automated reply stating that due to high demand they can't read or respond to all emails.

    Maybe the fuller version is just about upto the job though?

    I have never posted the fuller version or any of the personal info to facebook. I'm now thinking I will post the fuller version and as it's been suggested that emailing them on mass might get a response?

    Maybe the fuller letter could be used for this with a suitable heading such as Facebook campaign for Panorama to tackle ME? Again your opinions please...
  5. coxy

    coxy Senior Member

    Messages:
    174
    Likes:
    1
    That's a fantastic piece well done!! The only point i'd like to make is that i was referrred to a neurologist who now goes down the LP route, so are they any better than any other specialist?
  6. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Thanks Coxy :Retro smile:

    I'm shocked to hear that about your neurologist !!! :eek: :eek: A neurologist supporting LP!! :Retro mad:

    Maybe I should clarify what I said in some way? I can't think right now, will see what comes to mind later...

    thanks for your input
    Jan xx
  7. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    My neurologist told me that ME didn' exist - he seemed disappointed that I wasn't demented (or perhaps I am?)

    giggle x
  8. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Okay I'm getting a bit scared now I'm seeing a new neurologist on Wed :worried: I have only recently had some confidence in the medical profession restored due the last one I saw -he's now retired.

    My GP seems to think this one will be fine too, but he did also say he thought Neurologists in general would be more sympathetic :rolleyes: I'm not sure if he just meant in certain cases though. In my case I've presented with significant tremors before so that's something they can see &diagnose? I dunno :(

    Neurologist should be trained that ME is a neurolgical disease!! :Retro mad:

    Anyway the letter:

    - 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. Need new bit to add here I think...

    still not coming to me, the cogs are turning slowly *creak creak*

    Jan xx



  9. fingers

    fingers Senior Member

    Messages:
    210
    Likes:
    7
    SW Endland
    (would like to quote all of this thread, but saving time and space).

    Oh, guys, what the Fukuda is going on?

    I honestly thought we'd moved past all this 10 years ago. Welcome back to the workd of ME, fingers.

    Well done, Jan for getting some air time. Yes, I think it shoud be coordinated. Any volunteers?
  10. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Really not with it tonight I just nearly posted the whole letter I actually sent to the facebook group as a template for people ** stating to hold off posting for now so we can build numbers and coordinate our efforts **

    Then just in nick of time realised it had lots of personal accounts from me in there :ashamed: I knew that really!!! :innocent1:

    Anyway, will have to sort that before can be used such a template....

    Gona go :sofa: for a bit I'm not being much use at the mo :tongue:

    Jan xx
  11. sproggle

    sproggle Jan

    Messages:
    232
    Likes:
    30
    Teesside, England UK
    Please scrutise this for me, it needs to be accurate..

    So I've just tweaked my original letter slightly to remove anything that referred to me personally so it could potentially be used on mass.

    Dear Panorama Team,

    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. Unfortunately little has changed since that programme aired and sufferers are still not getting the support and recognition they truly deserve.

    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 and isn't always present. Most patients present with flu like symptoms and a variety of cognitive and neurological disturbances which severely restrict mobility and basic daily activities.


    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.

    [FONT=Times New Roman, serif]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) [/FONT]
    [FONT=Times New Roman, serif]http://www.ncf-net.org/memorial.htmAn excerpt from this site:[/FONT]
    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. Few sufferers get to see a Neurologist on diagnosis, 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. Many patients have suffered the indignity of being patronised and personally blamed for being severely ill. Most sufferers will be turned down for Disability Living Allowance despite being severely affected and in need of constant care. Although the majority of sufferers who are able to take their case to tribunal seem to manage to get DLA in the end many are just not capable of this. Most are just too unwell to appeal at tribunal and it is wrong to routinely put severely ill people through this.
    The DLA form is 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 ours 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.


    Thank you for your time
    yours sincerely

    Can those more experienced minds look this over for me pretty please ???? To check the integrity of the arguements, and references as well as just basic brainfogness

    Thanks
    Jan xx



  12. fingers

    fingers Senior Member

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    Jan, this is an awesome job. Far better than I could do. I don't know if it's the best approach to get the desired result (just don't know), but I don't think it couldn't be massively improved upon for what it is.
    Maybe you could add in the opening paragraph a reference to a study currently being commissioned to the tune of 164k to assess whether children with ME can be helped by a pseudo-psychological technique called the Lightning Process, delivered by a street trader called Phil Parker, who charges sufferers 600 for 3 half days of training. (????)
  13. creekfeet

    creekfeet Sockfeet

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    Super Sprog, that's wonderful. If they get a whole ton of letters like yours then if nothing else they'll feel like shits for ignoring them.

    I'm not familiar with Panorama but have been considering pulling a couple of contacts to do some coverage of ME/CFS here in the States. The angle that would be of most interest to them might be the same one in that 1996 piece: why isn't CDC acting?

    I don't know if Panorama would be interested at all in taking things from an Investigative Journalistic angle, but if so then would they be interested in knowing about the British health records that have been put under top security?

    I had a hard time following the thread with that story in it, but that's the sort of thing I hope to pull together to offer to journalists I know here. Is something being ignored, suppressed or even covered up by our governments?

    I know that sort of question would pique interest in some journalists, but then others would roll their eyes and say oh yeah another conspiracy theory.
  14. jace

    jace Off the fence

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    This is an idea I'm working on too - posting because the more the merrier :D
    I sent this to my ex sister in law, who has made documentaries for Despatches, among others. This is her reply -
    She was thinking I wanted to be the writer/director - I haven't got the stamina for that! :worried: I was hoping she might pick it up. Having said that just now, maybe I should ring her, and suggest it directly. Rambling, not so great at the moment...

    Posting FWIW in case it clarifies things or saves anyone some work.
  15. Andrew

    Andrew Senior Member

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    Then why not focus on that for awhile. I've seen any number of TV shows where they present their topic in such a way that the "expert" ends up looking like a fool.

    1. It seems the bullet points for this is UK is member of WHO, and WHO defines it as a neurological disease.

    2. His diagnosis for ME doesn't require myalgias or encephalomyelitis; the are only listed as optional. Nor, does his diagnostic criteria match Ramsey.

    3. He has lumped two illnesses together and taken away all their symptoms but one, fatigue.

    4. Looking for coughing alone does not diagnose tuberculous. Looking at fatigue alone does not diagnose CFS or ME. There is no such thing as a syndrome with one symptom. But the thing is, the Panarama TV show needs to have his definition in their hands, so they can bust him if he tries to talk around it. They also need to get some other quote or good source stating that they actually follow his definition in research. Otherwise he cn lie and it will backfire. But if this can be done, a key point could be they are studying idiopathic chronic fatigue and claiming otherwise.

    5. As a result of his manufactured and incorrect diagnostic method he is sampling a mixed group and that skews results.

    6. Netherlands instituted he methods and they found them useless.

    Anyway, I'm not saying to target Wessely. Just discredit the POV he uses.
  16. sproggle

    sproggle Jan

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    Thank you all for your thoughtful and constructive replies! :thumbsup:

    I have begun to re draft with the help of your suggestions. It's currently taking the form of a list of things The Panorama Team should investigate (to spark their journalistic juices!) followed by a list of facts (similar to my original draft).

    I will be posting it here &would like your opinions &any criticisms again as I value your opinions (&don't trust my ME riddled brain not to make any major blunders! :rolleyes:).

    Andrew, thanks you helped me concentrate my arguement, against the Oxford criteria and vagueness

    Jace some good questions there!

    Creekfeet, thanks I realise that appealing to the investigative journalists is a valuable approach. Yes Panorama is all about investigative journalism.

    Fingers good point about LP, now there is such a study it's definitely due more thorough public scrutiny

    OMG it's 3.20am! :eek:
    Must try to sleep....

    Jan xx
  17. starryeyes

    starryeyes Senior Member

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    SuperSprog and Jace!! I just want to cheer you on!!!

    :victory::victory::victory::victory::hug::victory::victory::victory::victory:

    :Retro smile::D:D:D:D:Retro smile:​
  18. sproggle

    sproggle Jan

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    Thanks Teej!!! :hug:

    Seriously considering changing my name by depole to SuperSprog it's doing my ego a world of good! :D

    Might not be too helpful when trying to convince doctors I'm not insane tho :tear:
  19. jace

    jace Off the fence

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    Thank you too, awesome Teejkay. I have noticed that you are no slouch either! :cool::victory:;):D:D;):victory::cool:
  20. sproggle

    sproggle Jan

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    Panorama Campaign..

    [FONT=Times New Roman, serif]In the interest of the general public we petition the Panorama Team to conduct a special investigation into the human rights travesty that is the long held government approach to Myalgic Encephalomyelitis, ME.[/FONT] [FONT=Times New Roman, serif]
    ME means:
    [/FONT] [FONT=Times New Roman, serif]My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation. [/FONT] [FONT=Times New Roman, serif]

    Things that need investigation:
    [/FONT]
    [FONT=Times New Roman, serif]The UK is a member of The World Health Organisation, and WHO has defined ME as a neurological disease since 1969. Why have Psychologists been allowed, even encouraged, to monopolise a psychosomatic approach to this very real physical disease at the complete neglect of biomedical research?[/FONT] [FONT=Times New Roman, serif]

    Why has a seriously debilitating neurological disease, which can be fatal, been allowed to be dismissed as Chronic Fatigue Syndrome, CFS?
    [/FONT] [FONT=Times New Roman, serif]
    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 situation that has been catastrophically damaging to sufferers and their carers/parents. The Oxford definition of CFS, as used by the psychiatric lobby, is deliberately broad and vague, it does not require myalgias or encephalomyelitis, they are only listed as optional. Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines, eight were in psychiatry or psychology, another six were research scientists, non-psychiatric clinicians were few.
    [/FONT] [FONT=Times New Roman, serif]

    CFS is a waste basket diagnosis, it allows patients to be neglected, ignored, even ridiculed if they continue to search for the biological cause of their very real disease. Doctors are trained how to 'deal' with such patients. They are told not to get into conversation about physical symptoms or to let on that they think they're delusional. To send them off with painkillers and anti depressants, a course of CBT to correct their abnormal illness beliefs and GET to drag them off the sofa and back to work. When this frankly ridiculous approach to treating a neurological disease fails to work, or results in further disability, who's to blame? The patient.
    [/FONT]

    [FONT=Times New Roman, serif]It has been convenient for both Psychologists and the medical establishment at large to continuously reiterate the same propaganda. Maybe they actually believe the misinformation themselves, maybe they realise they're in the wrong, who knows? [/FONT] [FONT=Times New Roman, serif]Unfortunately the harsh truth has been known by those unfortunate enough to have had their lives blighted by this disease for decades. Patient advocates have repeatedly put foreword articulate arguments quoting scientific studies that show significant and varied physical abnormalities in ME patients. The abnormalities found in ME patients (when the correct tests are done) include: brain lesions, abnormal fluid in their spinal cords and immune system dysfunction, why have these findings repeatedly been ignored? [/FONT] [FONT=Times New Roman, serif]

    Sufferers of the extremely debilitating neuro-immune disease ME have been lumped into the broad waste basket diagnosis of CFS and quickly dismissed by the medical profession at large. The Oxford Criteria is too inclusive. A number of different types of illness including ME are being lumped together under the single banner 'CFS'. The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed up to 1.4 million people in the UK had CFS. Estimates of ME incidence are much lower. Supporters of the psychosocial model and the term CFS are studying idiopathic chronic fatigue and claiming otherwise.
    [/FONT] [FONT=Times New Roman, serif]

    The soon to be published Medical Research Council CFS PACE* trial is one example of many government funded studies which researched solely psychologically based approaches to ME/CFS. This study of CBT and GET on ME, costing millions of pounds of tax payers money, uses the vague Oxford Criteria psychologists love so much. The government bias towards a psychosomatic approach is bewildering. Who ultimately can be held responsible for allowing this to happen? What are the motives behind it?

    [/FONT] [FONT=Times New Roman, serif]Why when Professor Malcolm Hooper wrote to Sir Michael Rawlins, chairman of NICE, supplying a 442 page report of evidence supporting his complaint against the MRC PACE trial did Sir Michael Rawlins feel it necessary to refuse to even look at the evidence provided and immediately return the entire report, stating he was “not prepared to enter into any correspondence on the matter”?[/FONT] [FONT=Times New Roman, serif]
    Why, when a group of sufferers brought a judicial review about the inappropriate nature of the NICE Clinical Guidelines(CG53) on ME/CFS, did the judge refuse to admit a large proportion of their evidence, then throw out their case "for lack of evidence"?
    Why is the MRC so intent on withholding files on ME, held in the UK Government National Archives, that date back to 1988 from the general public? The files in question, originally due for release in 2023, are now to remain secret until at least 2071. Why does the government deem it necessary to enforce such an extraordinarily long time of closure on these files which are of great significance to public health?
    [/FONT]

    Why aren't ME patients routinely referred to Neurologists and why are Neurologists still not widely knowledgeable about ME? Few sufferers get to see a Neurologist on diagnosis, many ME sufferers will never see one.
    [FONT=Times New Roman, serif]Why is there no empirical diagnosis available under the NHS for ME/CFS? Why will the NHS not fund the tests that diagnose the disease, yet they will fund the many tests that don't show the physical damage caused by ME?

    Why was Sophia Mirza, a gravely sick ME sufferer, forcibly removed from her home in 2003 and sectioned in a mental institution? An action which ultimately hastened her death. In Sophia's case it her autopsy that finally provided the physical evidence of disease, in life she was utterly neglected by the medical profession who refused her treatment and instead inappropriately incarcerated her in a mental ward. This criminal neglect of vulnerable ME sufferers has been the status quo for decades, why has this been allowed to happen and for so long?
    [/FONT]


    [FONT=Times New Roman, serif]Why when there are many opportunities to research the physical disease process in ME patients, is this not being done and instead the psychosomatic approach to management repeatedly studied instead? Why is it continuously left to patient funded charities to conduct biophysical research when the government is willing to spend millions on trials for CBT and GET?[/FONT] [FONT=Times New Roman, serif]

    Thanks to a number of committed researchers in Nevada, a recent study was published in Science that strongly links the retrovirus XMRV* to a well defined cohort of ME/CFS patients. This was the most exciting and encouraging step forward in research into the disease in many years. Why was a UK XMRV study* (led by psychiatrists) then immediately rushed through without consultation with the WPI, who's study they were supposed to be replicating, and given only four days for peer review? The resulting rushed study was unable to find XMRV, which is known to be difficult to detect, in any of the 186 samples. The rigorous WPI study detected XMRV in 3.7% of the healthy population studied, by that ratio even if every single one of the Imperial College study patient group had been wrongly diagnosed with ME/CFS and simply had idiopathic chronic fatigue, they still should have found evidence of XMRV in 6 of the samples. This was yet another cynical attempt by vested interests to discredit any scientific study that dares show proof of physical disease.
    [/FONT] [FONT=Times New Roman, serif]

    It has taken a privately funded institute in America to bring this evidence to light more than 26 years after it was widely known to be a serious neuro-immune disease. The 1984 outbreak in Nevada provided substantial evidence of physical disease. Patients scans showed brain legions and other tests showed distinct immune dysfunction. However, the American authorities already dealing with the AIDS epidemic decided to ignore this serious transmittable disease at great cost to all involved. The way the CDC ignored the outbreak was shameful and once the patients had conveniently been marginalised, the government stance was set in stone. The situation in America is scarily similar to the one in the UK except for one saving grace, a few wealthy, caring, truth seeking people fighting against the system to help patients and get justice. This whole fiasco is carefully reported in full by Hillary Johnson, an investigative journalist, in her book Osler's Web* (originally published in 1996).
    [/FONT] [FONT=Times New Roman, serif]

    There is an unfortunate history of ignorance towards previously unknown diseases. MS was once dubbed the malingerers charter, AIDS was once dismissed as a disease that only affected gay men. When will the wide spread discrimination towards ME sufferers end? When will patients finally be free from being coerced and bullied into dangerous GET programs? When will the severely affected finally be free from the threat of being sectioned, simply for failing to recover? The 1999 Panorama Programme “Sick and Tired” highlighted the mistreatment of children with ME by the medical profession, it is regretful nothing has changed.

    [/FONT][FONT=Times New Roman, serif]We need to once and for all dismiss the ridiculous opinion that ME is in anyway related to mental health problems or abnormal illness beliefs. People become anxious and or depressed due to this chronic illness, as with any serious illness. Helping people overcome these difficulties is important and can no doubt improve quality of life. However, it is a completely separate issue to the illness itself and should be treated as such.[/FONT] [FONT=Times New Roman, serif]

    Although this petition has mainly referred to ME/CFS. ME/CFS has many similarities with the related neuro-immune diseases Fibromyalgia, Atypical MS, Multiple Chemical Sensitivity and Gulf War Syndrome. The need for the right medical tests to be done in order to properly diagnose these patients and biomedical research to be done to further treatment applies equally to these conditions which are likely all variants of the same disease simply going under different names.
    [/FONT] [FONT=Times New Roman, serif]

    Yours Sincerely,
    [/FONT] [FONT=Times New Roman, serif]



    References
    [/FONT] [FONT=Times New Roman, serif]

    The CFS Oxford Criteria
    [/FONT] [FONT=Times New Roman, serif]
    The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb. 1991, pp 118-21.
    [/FONT] [FONT=Times New Roman, serif]OXFORD CRITERIA (1991)
    [/FONT][FONT=Times New Roman, serif]Chronic Fatigue Syndrome (CFS)[/FONT] [FONT=Times New Roman, serif]
    a:- A syndrome characterised by fatigue as the principal symptom
    [/FONT] [FONT=Times New Roman, serif]
    b:- A syndrome of definite onset that is not life long
    [/FONT] [FONT=Times New Roman, serif]
    c:- The fatigue is severe, disabling, and affects physical and mental functioning
    [/FONT] [FONT=Times New Roman, serif]
    d:- The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time
    [/FONT] [FONT=Times New Roman, serif]
    e:- Other symptoms may be present, particularly myalgia, mood and sleep disturbance
    [/FONT] [FONT=Times New Roman, serif]
    f:- Certain patients should be excluded from the definition.
    [/FONT] [FONT=Times New Roman, serif]
    They include:
    i:- Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician
    [/FONT]
    [FONT=Times New Roman, serif]ii:- Patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion.[/FONT] [FONT=Times New Roman, serif]


    Ramsay definition:
    [/FONT]
    [FONT=Times New Roman, serif]Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

    [/FONT][FONT=Times New Roman, serif][Muscle phenomena]: Muscle fatiguability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise. [/FONT] [FONT=Times New Roman, serif]

    [Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.

    [/FONT][FONT=Times New Roman, serif][Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoeuvres such as turning a key in a lock or taking the cork of a bottle. [/FONT] [FONT=Times New Roman, serif]Circulatory impairment. Most cases of ME complain of [/FONT] [FONT=Times New Roman, serif]Cold extremities and [/FONT] [FONT=Times New Roman, serif]Hypersensitivity to climactic change, [/FONT] [FONT=Times New Roman, serif]Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill [/FONT] [FONT=Times New Roman, serif]Cerebral dysfunction [/FONT] [FONT=Times New Roman, serif]The cardinal features: [/FONT] [FONT=Times New Roman, serif]Impairment of memory [/FONT] [FONT=Times New Roman, serif]Impairment of powers of concentration and [/FONT] [FONT=Times New Roman, serif]Emotional liability

    [/FONT][FONT=Times New Roman, serif][Other] common deviations from normal cerebral function: [/FONT] [FONT=Times New Roman, serif]Failure to recall recent or past events, [/FONT] [FONT=Times New Roman, serif]Difficulty in completing a line of thought[/FONT] [FONT=Times New Roman, serif]Becoming tongue-tied in the middle of a sentence, and a [/FONT] [FONT=Times New Roman, serif]Strong inclination to use wrong words, saying “door” when they mean “table” or “hot” when they mean “cold”[/FONT] [FONT=Times New Roman, serif]Complete inability to comprehend a paragraph even after re-reading it [/FONT] [FONT=Times New Roman, serif]Bouts of uncontrollable weeping[/FONT] [FONT=Times New Roman, serif]Alterations of sleep rhythm or vivid dreams, or both[/FONT] [FONT=Times New Roman, serif]

    [Accompanying] features [that] can only be attributed to involvement of the Autonomic nervous system:
    [/FONT] [FONT=Times New Roman, serif]Frequency of micturition (urination) [/FONT] [FONT=Times New Roman, serif]Hyperacusis (hypersensitivity to noise) [/FONT] [FONT=Times New Roman, serif]Episodic sweating [/FONT] [FONT=Times New Roman, serif]Orthostatic tachycardia . . . [/FONT] [FONT=Times New Roman, serif]Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis. [/FONT] [FONT=Times New Roman, serif]An alarming tendency to become chronic. [Added in the 2nd edition, 1988][/FONT] [FONT=Times New Roman, serif]The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting. [/FONT] [FONT=Times New Roman, serif]Instead of an uneventful recovery the patient is dogged by: [/FONT] [FONT=Times New Roman, serif]Persistent and profound fatigue accompanied by a medley of symptoms such as [/FONT] [FONT=Times New Roman, serif]Headache [/FONT] [FONT=Times New Roman, serif]Giddiness [/FONT] [FONT=Times New Roman, serif]Muscle pain, cramps, or twitchings [/FONT] [FONT=Times New Roman, serif]Muscle tenderness and weakness [/FONT] [FONT=Times New Roman, serif]Paraesthesiae [numbness or tingling in the extremities] [/FONT] [FONT=Times New Roman, serif]Frequency of micturition [urination] [/FONT] [FONT=Times New Roman, serif]Blurred vision and/or diplopia [double vision] [/FONT] [FONT=Times New Roman, serif]Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing] [/FONT] [FONT=Times New Roman, serif]Tinnitus [constant sound in the ears], and a [/FONT] [FONT=Times New Roman, serif]General sense of “feeling awful.” [/FONT] [FONT=Times New Roman, serif]Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia … [/FONT] [FONT=Times New Roman, serif]All cases run a low-grade pyrexia (fever), seldom exceeding 100F (c. 38C) and usually subsiding within a week. [/FONT] [FONT=Times New Roman, serif]A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.


    [/FONT][FONT=Times New Roman, serif]PACE stands for[/FONT] [FONT=Times New Roman, serif]Pacing, graded Activity and Cognitive behaviour Therapy: a randomised Evaluation[/FONT]

    [FONT=Times New Roman, serif]Imperial College London XMRV Study " [/FONT] [FONT=Times New Roman, serif]Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome" was authored by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely, Anthony Cleare. Article available at [/FONT] [FONT=Times New Roman, serif]http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519[/FONT]

    The Whittemore Peterson Institute for Neuro Immune Disease Research Centre is located at The University of[FONT=Times New Roman, serif] Nevada, Reno. http://www.wpinstitute.org/[/FONT]


    [FONT=Times New Roman, serif]The paper entitled "Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients" was published in Science on 8th October 2009. http://www.sciencemag.org/cgi/content/abstract/1179052[/FONT] [FONT=Times New Roman, serif]
    After further refinement of testing XMRV was detected in an astonishing 95% of the patient group.
    Quote from WPI website under Overview of XMRV section.
    [/FONT] “[FONT=Times New Roman, serif]We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections.......[/FONT] [FONT=Times New Roman, serif]Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others. ”[/FONT] [FONT=Times New Roman, serif]

    Osler's Web, originally published in 1996 by Hillary Johnson. Is an investigative journalists detailed account showing lack of appropriate on behalf of the CDC and NIH to ME. The story starts back in the early eighties and is a thorough first hand account in which all sources are named and all information rigorously authenticated. A must read for any ME campaigner able to do so.
    [/FONT] [FONT=Times New Roman, serif]

    Quote about the book from http://www.oslersweb.com/
    [/FONT] “[FONT=Times New Roman, serif]Osler's Web [/FONT][FONT=Times New Roman, serif]will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.”

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