The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Sunday Times of Malta: 'I feel I'm living in a cage that's closing in on me'

Discussion in 'General ME/CFS News' started by Firestormm, Apr 29, 2012.

  1. Firestormm

    Firestormm Guest

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    29 April 2012: http://www.timesofmalta.com/article...ng-in-a-cage-that-is-closing-in-on-me-.417447


    [​IMG]

    Rebecca Sultana was a healthy woman in 2001, going to the gym regularly and enjoying a full life. Right: She has since lost 13kg and today rarely leaves her house because of her debilitating illness. Photo: Darrin Zammit Lupi.

    The warm spring temperatures have failed to penetrate the dark living room where Rebecca Sultana is huddled in a sweater and woolly slippers.

    Ms Sultana, who turns 35 tomorrow, is so frail and weakened by ME myalgic encephalomyelitis that she constantly feels cold, noise exhausts her and she is sensitive to light.

    Persistent pain gnaws at her disappearing quality of life, but she has made a mammoth sacrifice to let The Sunday Times into her home to push an important message to the authorities ME has to be officially recognised as a disability.

    We want ME to be put on the governments list of disabilities its the only way we can get any support, Ms Sultana, the founder of ME Sufferers Malta, said.

    ME is a debilitating illness characterised by a range of neurological symptoms, muscle pain and intense physical or mental exhaustion.

    Its cause is still unknown and there is no known cure, according to neurologist Anthony Galea Debono who diagnosed Ms Sultana with ME after she had spent four years struggling with what she described as a perplexing, painful illness with no name.

    There is no exact definition of ME, which makes it a bit difficult to diagnose. Its a combination of symptoms, one with good and bad weeks, he said, explaining why it often took long to secure adiagnosis.

    Medically speaking there are no tests whatsoever that can confirm you have ME. All available blood tests and radiological investigations are unhelpful it has to be a clinical diagnosis, Dr Galea Debono said, adding it remained unclear how many suffered from this condition in Malta.

    This misunderstood condition has courted its share of controversy because for many years there was a debate as to whether ME was actually an illness at all.

    Although questions remain, ME has been recognised as aneurological illness by the World Health Organisation, which gives some reprieve to sufferers who have to put up with disparaging comments and guilt that its all in our heads or to snap out of it.

    ME is often described as chronic fatigue syndrome (CFS), an umbrella term. But, according to the ME Research UK, in recent years there has been a growing recognition that CFS was too broad. At present, efforts are being made internationally to remedy this diagnostic confusion and meanwhile the term ME/CFS is frequently used.

    This situation coupled with a lack of awareness in Malta has made patients battle to get their condition recognised doubly hard and the sad thing is they are often too worn out and chronically ill to push their cause.

    The government has completely ignored individual patients and ME Sufferers Maltas pleas for assistance in the form of benefits and services (home help etc...) but most importantly for specialist medical care, which should be ours by right, she said, becoming breathless each time she attempted to stress a point.

    ME patients, she said, were dealt a blow to learn ME had not been included in the recently amended list of medical conditions that made them eligible for free medicines.

    Although there was no cure, patients receiving an early diagnosis and offered a supportive management regime with case-specific examinations were less likely to deteriorate, she said.

    There were private clinics abroad that provided these services, but unless patients were sent by the government or subsidised, attending such a clinic will only remain a pipedream for an already miserably hard-up patient.

    When asked if the government would recognise ME as a disability, a Family Ministry spokesman insisted that complaints by ME sufferers and their families were not being ignored.

    On the contrary, this ministry was in the process of evaluating the recommendations of a working group set up to specifically analyse, revise and submit fundamental changesto benefits paid to people with disabilities.

    This report, he said, focused on what determined disability, the benefits linked to disability, and the restructuring of the benefit system applicable to disability.

    ME sufferers have made their complaints at just the right time when discussions on the reform of the disability were just starting, the spokesman said.

    On the subject of free medicines, a Health Ministry spokesman pointed out that there was, as yet, no known pharmacological treatment or cure specifically indicated for ME.

    There was some evidence showing that cognitive behaviour therapy and graded exercise therapy could benefit certain sufferers. Given such evidence, the ministry was assessing the possibility of offering training to local professionals to deliver such programmes.

    The ministry was aware that patients were requesting specific services, particularly the setting up of a specialised one-stop shop type of clinic, and it was exploring these possibilities.

    Given MEs chronic nature, the ministry believes it is through developing sustainable local services that sufferers will be able to receive appropriate specialised care and support, the spokesman said, adding it was not the ministrys policy to fund treatment that was only available abroad.

    In the meantime, ME sufferers like Ms Sultana, and actor Kevin Drake, try to summon theirfailing energy to reverse theignorance surrounding this illness and petition authorities to help them out.

    Mr Drake said: The future is frightening. Terrifying... Its an uphill task of attempting to retain a modicum of dignity in a life already rent asunder by the hurricane-like havoc the condition wreaks.

    Both patients have lost their appetite and consequently are inching towards being dangerously thin. They suffer from depleted mobility, persistent pain, low self-esteem, low bone density... and severely diminished finances as they seek to control the symptoms.

    Ms Sultana, a former teacher who lives with her husband Reuben, wondered out loud how he was still with somebody who was like a robot.

    If I were him Id have run a mile years ago, she said, adding that even a hug could sometimes be too painful to bear.

    I feel as if Im living in a cage that is closing in on me... ME may not be fatal, but it is an excruciatingly painful, exhausting and soul-destroying life sentence.
    All about ME

    The primary symptoms of ME/CFS are: post-exertional malaise, mild fever, sore throat, swollen lymph nodes, muscle weakness, muscle/joint pain, headache, memory and concentration problems, sleep dysfunction and fatigue.

    The symptoms vary greatly from person to person, with some having to be tube-fed and bed-bound, while others are just about able to hold down apart-time job.

    Evidence shows ME patients die 25 years younger than normal.

    ME/CFS has a huge impact on the lives of families and carers, but little, if any, support is available to them.

    End.

    Note:

    Tony Britton permalink


    Rebecca Sultana has already left this comment on another forum. I have her permission to repost it:

    Although I thought it would be much much better, its a good article if it wasnt for this atrocious paragraph:

    There was some evidence showing that cognitive behaviour therapy and graded exercise therapy could benefit certain sufferers. Given such evidence, the ministry was assessing the possibility of offering training to local professionals to deliver such programmes.

    I am too ill to do anymore. I beg anyone who can muster some energy to write and explain the implications of such ill-advised at best (CBT) and worryingly possibly fatal (GET) therapies. PLEASE.

    Good Sunday.

    Love,

    Rebecca xx
     
    Little Bluestem and Googsta like this.
  2. free at last

    free at last Senior Member

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    She does look ill, doesnt she. That feeling of being in a cage, says it all. Another way to describe it. is wanting to run away from ones self. Tear yourself open get out and run away. This horrible sensation, in time can turn into a seriouse phobia. That can lead to PTSD and panic attacks. And fear of being outside around people that may carry viruses, that could put you back in that cage.

    The effect this illness can have on the mind, is devstating. when people have phobias, they can often avoid them.What if the phobia is yourself. how do you avoid yourself. That is the most awful phobia one can have. Even after recovery i cant rid myself of that phobia. it will come with me to my grave. No wonder psychiatrists confuse themselves over this illness, because it can lead to mentall illness. not the other way around.
    My sympathy is with this poor lady. i understood exactly what she means, as most in the same place do
     
    Googsta likes this.
  3. Desdinova

    Desdinova Senior Member

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    What an utter load. I would ask where the UK Health Ministry Spokesperson was getting there information from, but I guess that is a redundant question considering the next paragraphs. Sometimes I wish the folks involved in the various world governments health agencies could be locking in a room together given truth serum and then asked some questions while being televised and recorded. It would be interesting to see the Ministry Spokesperson and others have to answer the following question.
    True or False
    ME's symptoms are
    1. Depression
    2. Fear avoidance (fear of activity, exercise, mental health practitioners)
    3. False illness beliefs
     
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  4. Googsta

    Googsta Doing Well

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    Thanks for posting this Firestorm. I love your signature BTW.

    It was a great article until that. I am so sorry for her that it went pear-shaped.

    She is the same age & year of decline as myself, yet she has accomplished so much for advocacy.
    As for looking unwell, I don't get the whole invisible illness rot. Everyone I have ever seen with ME/CFS looks terribly unwell.
    I have friends with MS who, even on their worst day look fine.

    The positive here is a great Neurologist. It is encouraging to hear that they are out there, they need some prompting but they can come through if they resist the peer pressure that is so prevalent in that branch of medicine.

    Yeah, I have to say it's still the best secular article I have seen.
     
  5. taniaaust1

    taniaaust1

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    What crap.. they can at least treat the symptoms of the ME even if they cant fix it. What are they they really meaning when they said the above? eg we dont want to treat any of your symptoms as this illness is just in your brain? or something like that.

    If a person is in pain or whatever.. even if they were still trying to work out exactly what is wrong.. pain should be treated.. other symptoms should be treated. So why arent meds being offered for ME at least to treat symptoms? (this is all the same bullshit attitude my past doctors had). Is this a statement of the symptoms of ME arent "real" so we wont offer patients anything for those.

    freeatlast. I dont know if phobias are any more common in ME then in any other serious medical issue.

    Feeling like one is living in a cage. isnt necessarily a phobic statement in the way as I think this person meant it.
     
  6. free at last

    free at last Senior Member

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    No i wasnt suggesting that phobias are more common than other seriouse conditions. Feeling like someone is living in a cage that is closing in on them could certainly be seen as a phobic statement. Thats how i felt, and it was certainly a very extreme phobic feeling ?
     
  7. Ember

    Ember Senior Member

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    ME sufferers appalled by proposed therapies

    The ministry has chosen to ignore the evidence on this neurological disease


    Sunday, May 6, 2012

    by Ariadne Massa

     
  8. taniaaust1

    taniaaust1

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    Quotes like that should noted and kept hold of... as a future date .. it proves how much UK has influenced world wide and how damage has been done all around the world which is connected to the likes of Wessely. (I'd love to see a world wide lawsuit one day targeting those who have caused all this to happen.. for the damages they have caused so many. One can sue medical manufactors for damages so why not the ME/CFS and CBT field???).

    It can not be denied that the actions of some in England.. have affected ME/CFS patients about the world, many negativity.
     
  9. Ember

    Ember Senior Member

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    Adopting the ME-ICC would help. Its authors specify that individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
     
  10. filfla4

    filfla4 Senior Member

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    Hi, I'm from Malta and I know the person in the photos well. She is extremely ill and was admitted to hospital today. She is a hugely brave person who has done much for ME advocacy over here.

    May I suggest that if anyone's interested, you go directly to the original article and read the online comments below...equally interesting reading...and some quite shocking! You can find it here:

    http://www.timesofmalta.com/article...fferers-appalled-by-proposed-therapies.418504

    You can read my comments under my name, Beatrice Gatt. Thanks to Rebecca's efforts, we now have a meeting scheduled with the Minister of Health in a few days.
     
  11. Carrigon

    Carrigon Senior Member

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    The worst part is, after all these years, we're still going through the same fights and arguments. We still don't have a proper name change, we still don't have the validation, recognition or respect we deserve. And ignorant people are still posting comments saying we're all just nuts. I can't stand it. Is this ever going to end? Why do we have to have the one disease where we still have to prove we are physically ill?
     
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  12. filfla4

    filfla4 Senior Member

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    Very true. I truly think that poor Rebecca has ended up in hospital because of the sheer stress of these two articles, being interviewed in her home by a leading journalist and having her face in the paper... plus all the consequent backlash. Insignificant compared to Rebecca's plight, but I ended up with a burst blood vessel in one eye...making me look like Dracula's wife for a week :) (Probably a spike in my BP). However here in Malta we're probably even further behind than the rest of you in terms of recognition/possible treatments. Malta is a tiny island. We can't drive for a few hours to get to see an ME-friendly specialist. Even alternative remedies are hard to come by. Most of us in our small local group are just too unwell to be consistent with our advocacy. I wish we could raise the funds to bring over one of the big names in this disease to lecture the local medical profession!
     
  13. Carrigon

    Carrigon Senior Member

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    filfla4 We no longer have a local support group where I live because everyone was too sick to attend. It's just so awful. I don't feel any of us are really conveying to the public or doctors just how disabling this disease really is. I know my own doctor doesn't have a clue how bad it is. I don't think she realizes at all that I'm 98 percent housebound. I gave her a well written twelve page letter detailing everything I go through with this disease and the only thing she picked out of it was advanced lyme. At the very least she has never said I'm nuts. But she hasn't got the slightest clue how to treat this disease. And really all she does is throw pain pills and muscle relaxants at me. Antibiotics for the infections, thyroid med for the Hashimoto's. It's basically, here's your pills now go away.
     
  14. Daffodil

    Daffodil Senior Member

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    the group here closed cuz no one could show up, too, it's like we are all alone in this
     
  15. SOC

    SOC

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    That's what makes these online communities so important. At least we're all alone together. :D
     
  16. filfla4

    filfla4 Senior Member

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    We don't have a "physical" support group. We have never met. Rebecca lives perhaps a 10min walk from my home. We have only ever communicated by email or text message. Yet we have shared a lot, confided in each other and help each other along the way over several years. Rebecca, with the help of her husband, set up a website for local sufferers (http://www.mesufferersmalta.org/) but hasn't been well enough to update it recently.

    @SOC - absolutely. I don't know what I'd do without my online friends.

    What is most frustrating is that we're all so unwell that none of us can keep up any pr campaigns for any length of time.

    @Carrigon - After 19yrs of being unwell, I was diagnosed with Lyme just 10 days ago (by PCR & Sequencing) and that only because I see a doctor in Brussels from time to time. None of my local doctors ever even thought of testing me for it.
     
  17. Carrigon

    Carrigon Senior Member

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    I honestly do not know exactly how much the lyme plays a part. What I do know, and I've been pretty silent on lately, is that vaccines and their ingredients are known to cause chronic immune dysfunction and POTS, not just autism. In my own case, it was definitely the vaccine they forced on me in college.

    The thing about vaccines is, it can take months to years before the true damage starts to show. That's why we never suspect it was the vaccines. They destroy the immune system and damage the brain and other organ systems. Then what happens is, you are left a ticking timebomb. Basically any random virus or infection can trigger our illness. So the old stealth theory isn't too far off. If doesn't matter what triggered it because you were already a timebomb for it.

    The vaccine industry is the biggest fraud on our planet. Vaccines were never proven safe or effective. They don't work. Most people who get sick with whatever they were supposed to be protected against, they were already vaccinated. And what we really see is, the vaccines cause the very diseases they are supposed to prevent.

    I could go on and on about this. What I really believe is we are vaccine victims and everything else is just secondary infections.
     
  18. Ember

    Ember Senior Member

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    AD calls for rights of persons with chronic conditions

    Article published on 10 May 2012

    http://www.independent.com.mt/news.asp?newsitemid=144137

     
  19. Googsta

    Googsta Doing Well

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    Hi Filfla
    is there any news on Rebecca's condition? I wish there were some way we could all send her our love & appreciation.
    Please let us know how the meeting with the Minister goes.
    :hug:
     
  20. filfla4

    filfla4 Senior Member

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    Rebecca texted me yesterday. She's as well as she could be. At the moment she's considering treatment abroad since local patients get so little support.
     

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