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  • Mrs Chakotay 10:17 am on May 16, 2014 Permalink | Reply
    Tags: , cfs, , , , , ,   

    ME: An Alternative View 

    The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

    http://aboutmy.me/

    I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

    But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

    But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.

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    • Emma Louise 7:23 am on May 19, 2014 Permalink | Reply

      Hello,

      I am a student journalist from the UK, currently studying at University of Technology Sydney. I also suffer from CFS.

      I am writing a colour story/feature on recent scientific discoveries linked to CFS such as the study (April 2014) where evidence was found that CFS sufferers have neuroinflamation.

      I have experienced the stigmatism attached to CFS so I am writing this story to discover what it means to people with CFS and the positive affects scientific evidence can have. I am also interested in those involved in the research and raising awareness process to hear their opinion on the fact that there is now scientific evidence linked to CFS.

      I wondered if I would be able to speak to you for my story?

      Kind Regards,

      Emma Louise

      Like

    • Hannah Jade 11:54 am on July 7, 2014 Permalink | Reply

      It Defiantly was an alternative view (Claiming CFS doesn’t exist).

      The process for being diagnosed for CFS is to have countless number of blood tests done and for GP and specialists to check them, before you are even sent to a specialist (Well that is the case in Bristol any way). Whilst it appears your friend had a misdiagnosis it does not mean the condition is not real, and I think calling it a myth is quite offensive and simply incorrect.

      I think one of the most important things is to get a knowledgeable, compassionate and supportive GP (Regardless of what you are suffering from), who will listen to you and preform more tests if you don’t feel a proper diagnosis has been given. My advise to anyone is to find a good GP if you don’t feel like yours is taking you seriously or try a different one in the surgery or even switch surgery all together.

      Whilst I think everyone is entitled to there own opinion, I think it needs to be said that CFS is a real condition (Even if it wasn’t what your friend suffered from) and through effective treatment (Nutrition, CBT, Counselling, GET and general life pacing) people do get better.

      Like

  • Mrs Chakotay 8:52 am on May 1, 2014 Permalink | Reply
    Tags: cfs, , , May 12th, , ,   

    ME Awareness Month 

    The month of May is “ME Awareness Month”, with May 12th being the particular day, and I have also seen the week starting May 11th designated as ME awareness week.

    ME is classified by the World Health Organisation as a neurologically-based disease. It is of unknown cause, although there are several theories including viral and environmental agents. There is no known cure.

    Unfortunately, in the UK the NHS seems to have ignored the WHO’s classification of ME as a specifically neurological illness, and has lumped ME together with any and all unexplained tiredness and fatigue, which can in fact be caused by a number of things, including Lyme Disease, Lupus, vitamin B12 deficiency and Pernicious Anaemia, Thyroid and adrenal problems, Sjögren’s, PCOS and other endocrine diseases, MS, fibromyalgia, depression and more, and has called the whole collection CFS, MEcfs or cfsME.

    Within the umbrella of CFS there is obviously a vast spectrum of symptoms which range in severity, from those who are experiencing a mild loss of ‘get up and go’ to those who are in constant pain and utterly bedbound and unable to care for themselves, and since it is an umbrella term, treatments that may be helpful for mild types of CFS, such as GET – graded exercise and CBT – cognitive behavioural therapy, are wholly inappropriate and can be harmful for those who actually have ME.

    CBT can be useful for people not coping well with any long term chronic illness but should not be touted as a main treatment for ME in the way that it is, based on the faulty assumption that CFS is inevitably linked to caused by psychological factors, and GET is harmful to PWME who have the key symptom of Post exertional malaise.

    This situation has been exacerbated by the psychiatric establishment which has greedily claimed all ‘CFS’ patients as their own, baselessly alleging that all CFS must be related to mental and emotional factors.

    Thus the tendency is to treat all CFS patients as though they are all suffering from an unexplained, probably psychologically-based, rather than neurologically-based illness, regardless of the severity, and further to fail to investigate thoroughly or adequately in order to rule out any other cause (such as those listed above).

    There is no definitive test for ME yet (largely because genuine research has been so scarce), and so ME should never be diagnosed until every other possible cause has been eliminated.

    The classification of ME together with any unexplained CFS is a nonsense which means that people who actually have curable and treatable diseases aren’t getting the help they could and should be able to expect, while those with ME are simply treated with disdain instead of receiving the palliative care they need.

    This is a wholly unacceptable situation for everybody involved, which helps no-one, except those few outspoken psychiatrists who like to gain notoriety by making the psychological case and denying the reality of the suffering.

    A friend has also pointed out that MS, asthma, duodenal ulcers and other illnesses were all considered psychiatric problems before biomedical caught up.

    I will try to post more on ME and CFS over the month.

    What can you do to help?

    Please help to raise awareness, both of the suffering and this intolerable situation of conflated classification:

    • share this post
    • like and share the facebook pages for May 12th and the ME Association
    • follow the #MEcfs hashtag on Twitter • you can download and print ME awareness leaflets from
    http://www.mechat.co.uk/db/tips.htm • donate to ME Research UK
    http://www.meresearch.org.uk/support-us/

    A quick p.s. to say I got the names of some of the treatments confused (blaim brain fog!) so I have done a quick edit and an update of my original post.

    Additionally, a note on the ‘Lightning Process’ which thankfully is not funded by the NHS, as it has harmed a number of people and made them worse so people need to be warned about this. See for example
    http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

     
  • Mrs Chakotay 9:30 am on February 13, 2014 Permalink | Reply
    Tags: cfs, , ,   

    Update on WHO re-categorisation of ME 

    I am very relieved to be able to confirm that the Guardian article which claimed that the WHO were planning to re-categorise ME etc has now been taken down due to inaccuracies, and the WHO have confirmed in a tweet that there is no such proposal.

    The blog post below articulates why, despite this good news, we still have a problem.

    http://loopys-rollingwiththepunches.blogspot.co.uk/2014/02/fibro-and-cfs-mental-disorders-who-must.html?m=1

    At some point I will write a post on my own illness and its treatment & diagnosis.

     
  • Mrs Chakotay 6:12 pm on February 11, 2014 Permalink | Reply
    Tags: cfs, , ,   

    ME to be re-categorised 

    Sorry to inundate you with posts today, and to post twice on the same subject, but Penny Swift Symanowski, who wrote the article on Dr Speight’s attempt to help Karina, drew my attention to this article.

    Apparently the World Health Organisation whose classification of ME as a neurological order had until now had gone some way to defend patients diagnosed with ME and related conditions, is now proposing to re-categorise ME, along with CFS, fibromyalgia and others as ‘mental and behavioural disorders’.

    This couldn’t be worse news for patients, and will likely result in more cases like Karina’s, along with more unhelpful treatment for adults with ME.

    If anybody knows of any petitions or any other recourse to complain or campaign, please do let me know.

    http://guardianlv.com/2014/02/fibromyalgia-and-mecfs-labeled-mental-and-behavioral-disorders-by-who/

     
    • Owls and Orchids 2:19 pm on February 12, 2014 Permalink | Reply

      Its very hard to believe they could be so callously small minded. How in heaven;s name can you say a muscular, joint, arthritic or whatever pain condition, of chronic duration is anything in comparison to a metal and behavioural disorder. If patients become depressed its because of the shallowness of decisions like this. Must stopbefore my head explodes.
      Susan x

      Like

    • lillbjorne 4:33 pm on February 12, 2014 Permalink | Reply

      I know! Apparently there are over 4000 pieces of research that back up the cateogorisation of ME as neurological, so I don’t know on what basis they are proposing the change, other than psychiatric peer pressure! 😦

      Like

  • Mrs Chakotay 4:23 pm on January 8, 2014 Permalink | Reply
    Tags: cfs, , , Devon, , , , , , , moving, , , ,   

    Review of the Decade so far! 

    Shalom!

    It has been a very long time since I posted (for those receiving this post on facebook, you can find my previous blog posts on http://messianickah.wordpress.com/ )

    In the three or more years since I posted, a great deal has happened to us. Firstly we have lost three babies – identical twins at 14 weeks due to TTTS (twin-to-twin transfusion syndrome) in 2010 and then a singleton in early 2012.

    My Dad died after a long illness in February 2011.

    The very next weekend we moved from the city to a very remote location in Devon where we had no internet access (even dial-up wouldn’t function due to the very ancient split-line technology!) We have now moved again to a slightly less remote location in Cornwall. The timing of this original move was extremely painful, and a terrible wrench for my mum who was left behind.

    In January 2012  our middle son was diagnosed with Type1 auto-immune Diabetes, a week after my last miscarriage. Again, the timing of this was extremely hard. Type1 Diabetes is often called Juvenile Diabetes, since it is often (though not always) diagnosed in childhood. This was a shock but not entirely a surprise – I had suspected diabetes for a very long time indeed, although I did not know the difference between types 1 and 2. More on that later, as it is a BIG subject and has utterly changed our lives as a family.

    My eldest son has now turned 18 and left homeschool for Sixth Form college at the school where his dad works, which has made for a much easier and pleasant transition. For those of us left at home though it is a challenge to adjust after having him at home with us for almost 15 years! It is truly a life-change for me as well as for him.

    The eldest two joined Scouts and Explorers (the younger two tried cubs and Scouts but couldn’t get on with it). I also started as a helper with Beaver Scouts, but had to give it up when I was without transport. I hope to take it up again this year.

    We were sadly forced to sell our house at a loss in 2012 after our tenants did a very good job of destroying the place (and we, being green and naive at the time had not thought to obtain landlord’s insurance, or even a deposit – the tenants were people we knew who were down on their luck and we thought we would do them a favour, which makes what they did all the more heartbreaking).

    So we are in rental accommodation again with no hope at this moment of buying a house again, sadly (unless our situation changes). The one good thing about that is that rental prices where we are now are fairly reasonable and we have a much bigger house than we originally left.

    We have been in this house now for just over two months, and we are still in a mess! I am slowly going through everything trying to streamline and adjust to our new circumstances (with no garage or shed, and not allowed to use the loft space, which does nullify the extra space somewhat).

    In between leaving our own home and coming here, we actually moved in effect five times: to an enormous rental house in a village in Devon, but which we had to leave after flooding. Secondly we lived for almost three years in a much-to0-small bungalow in another very remote village in Devon, but were flooded out after just a month in August 2011 and had to stay in a cottage temporarily. We moved back into the bungalow in October 2011. The bungalow was located in the most spectacularly beautiful countryside, with farmland all around. Sadly the experience was marred by cluster flies that we couldn’t get rid of, and crashing my car which made the whole of 2012 a very difficult year for me, with a 7 mile walk to the bus stop, we didn’t get out much!

    Our new location is less remote, being 5 miles outside town instead of 15 miles out. At a pinch, if I were without transport again,’ it would be conceivably possible to walk to the local post office which is a couple of villages away, or even into town if I needed to.

    However, after more than 10 years with a non-descript semi-diagnosis of CFS (‘chronic fatigue syndrome’) I finally obtained a more firm diagnosis of ME (‘Myalgic Encephalomyelitis’) again, another huge subject which merits further discussion. It’s not a diagnosis I am pleased to receive, and I still hope that it is wrong and have spent the last few months persuading my new GP to run tests to eliminate every possible other thing it could be, without any helpful results so far.

    I have not found a suitable fellowship since we moved, and believe me I have looked very hard indeed. There used to be a Messianic Fellowship in Devon some years ago but it is long gone now. I have tried to make friendly links with Christians in the area though, and visiting several different Salvation Army corps in Devon and Cornwall. Sadly none of them are very close by, but I tend to be most comfortable with The Salvation Army as it is an active, working church. I have tried without success as well to find believers friendly to Israel who would be interested in forming a prayer group, but I’m sure that will come about in the L-RD’s time.

    So all in all, this decade has been a very hard one so far, but I am confident that with this move, things are looking up, and I am looking forward to a year full of blessing.

     
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