ME: what’s the latest?

26 comments

1. This article understates ME. It gives the impression that ME can be managed. That the symptoms are treatable with pain-killers, sleeping pills etc.

   In reality people with ME are highly drug sensitive and for the severely affected, there may be no pain relief whatsoever. Sleep is unrefreshing, tends not to follow a normal pattern, and rest can lead to worsening symptoms, especially for the severely affected. In fact rest, as the well-person knows it, is impossible to achieve in severe ME.

   There are a range of serious neurological symptoms , not mentioned in this article, which are frightening, unremitting and which go untreated in the UK, such as paralysis, spasms, swallowing difficulties, extreme pins and needles, noise, light sensitivity . Many people suffer from these symptoms.

   It is these sort of symptoms which clearly identify that ME is a serious neurological disease, not just a vague fatigue condition.

   A key element and difference between ME and other fatigue illnesses is the absolute presence of post-exertional malaise and fatigue, which means thyat any activity, mental or physical, can lead to worsening symptoms and increasing disability,

   ME is a truly horrible illness, that leads to people being completely isolated from friends, family and everything that people normally take for granted.

   Pacing may be effective for people with mild or even moderate ME, in helping them cope, but it is not going to make them well. For the severely affected, pacing is a non-starter, as they simply do not have the functional ability required.

   What is needed is a serious change in attitude and policy towards this severely disabling, multi-system dysfunctional illness and massive funding injection into biomedical research to find out what is going on in people’s bodies to cause such impairment.

   Accepting pacing and very limited symptom management, does not begin to address the needs or the seriousness of this disease.

   Comment by Greg Crowhurst on 20 May 2010 at 9:39 am

2. It’s nice to see an article that takes ME seriously. I have had ME for 34 years – it affects your whole life.

   As Greg says – for me, the worst symptom has always been the post-exertional malaise. I go through good periods and bad. When I’m in relapse everyday life is a struggle. In good periods I can lead a relatively normal life.

   I say relatively – because any serious exertion will leave me in bed for a couple of days, whilst my friends get on with their life.

   Over the years I have found that taking ginseng can sometimes help if I’m having a not too serious relapse.

   Comment by Carol Smith on 20 May 2010 at 11:45 am

3. Ive had ME, well diagnosed Me now for 18 months… 4 years £1000 and many different visits to Dr’s just to diagnose.. Its awful that as much as you explain to people how “tired” you are they just dont understand or just dont care.. people see you as lazy (which im far from) or just bone idle… Its the worst illness I have ever come across in my whole life, and one that everyday I wish would go away.. Ive been told that I may have it for another year, or the rest of my life. they just dont know. This illness needs more public media attention, as SO many people just dont understand.. It affects everything in life. from brushing your teeth to drinking a glass of water…
   Ive read Dr Shepherd a million times, but I couldnt remember a single page of the book if I tried… and this is coming from someone who has degrees in many subjects!! and the BENEFITS SYSTEM.. dont get me started on that.. They all need training on this illness… well totally exhausted now after my little rant… all I say is, dont give up, and the posts are great, lets all pray for a cure

   Comment by Claire on 20 May 2010 at 12:36 pm

4. Greg, thank you!!! I just finished reading “Chronic Fatigue Syndrome The Facts” and all it did is made me feel worse because it implies that the burden of the disorder should be on the patient……I totally agree with everything you said and I think, for those of us who are completely disabled by the fatigue, the coping strategies the medical establishment suggests are, in fact, for those individuals who are just noticing mild symptoms. For the rest of us who have difficulty taking a shower, making a cup of coffee, or have no family support, “alternating rest and activity periods” or “maintaining a healthy diet” is NOT going to improve quality of life; we have already learned years ago to do all of those things with little benefit in decreasing symptoms.

   Comment by Jen Martin on 20 May 2010 at 12:57 pm

5. I have ME or is it CFS? Could be Fibromyalgia! I have had this horrible fatigue for 25 years. I manage it reasonably well – I consider my symptoms to be mild/moderate. I take Amitriptiline which helps with the pains. Every morning I wake up the first thing I think his “here we go again”. The fact that this illness is unrelenting, it never takes a day off. People think if you have a holiday you will come back cured. I am fighting for my job at the moment because my employers just don’t understand. This would be difficult enough for a well person but for someone who is ill even makes it more difficult. I am sick of people telling me it’s psychological. Let’s start taking this serious and have some research done.

   Comment by Sheena on 20 May 2010 at 2:13 pm

6. I have symptoms during the day that I find impossible to treat. I sit up until I can sit no more because of pain and stiffen in my upper spine and neck. When I lay down I endure pain that engulfs my whole body and just feel dreadful with a rapid heartbeat. This is not anxiety. I find although I am not asleep I cannot get my head of the pillow. This can be for 20 mins !hr or lots more time. I am unaware of how long it lasts.

   I then get up and feel a little better for a short while and it starts all over again

   So during the day I am either sat up in pain are laid flat and suffer this horrendous episode. No drug or suppliment has ever solved this problem.

   You cannot call it fatigue

   Comment by I Thorpe on 20 May 2010 at 2:19 pm

7. It should be remebered when talking about ME that there is no specific diagnostic test and a dianosis is trial and error having excluded everything else.

   Thus anyone who says they have recovered may not have had ME but a fatiguable illness with similar symptoms.

   Pacing also is only any good for those with mild to moderate symptoms, no good at al lfor teh 25& severely affected and mostly bedbound.

   Alternative remedies, again care has to be taken as some may nullify the effects of prescription medication taken for other reasons, as happened with St John Wort in the past, it could be that someone on the contraceptive pill may fall pregnmant.

   The picture too give the wrong impression, I have yet to see anyone with ME look so peaceful in sleep. Were it a real person they would suffer non refreshing sleep, if they were able to, but would mostlikely be sat there looking and feeling terible. With ME one doesn’t nod off at the drop of a hat.

   Comment by Trevor Wainwright on 20 May 2010 at 2:49 pm

8. “Every morning I wake up the first thing I think his “here we go again”

   This is exactly how I’ve felt since I got Mono 20 years ago. Every day is a struggle no matter what I do and in 20 years I’ve done and tried everything. After I got Mono I could barely walk 10 steps and my tolerance to alchohol (this is the first time I’ve heard this mentioned so it’s interesting to me) became zero. I feel like I have the flu all the time; that malaise feeling along with body temp fluctuations that are crazy. My muscles shake like crazy under any stress or use. CF is a life wrecker

   Comment by Lauren on 21 May 2010 at 4:41 am

9. I am 17 years old and have had M.E for 3 and a half years, I spent two years trying to pretend everything was fine and it left me bedbound for 6 months as my GP and peadiatrian told me if I was tough everything would be fine. Over the last year I have slowly improved thanks to my occupational therapist. I fully appreciate that some pople really can’t get better as two of my uncles have been ill for decades.

   I think it’s important to point out that there is a whole spectrum of M.E with different and varying symptoms, I also think that there is a clear difference between children with M.E and adults and just because a child has recovered it doesn’t mean it was a different illness.

   Also the kind of support you get from school or work makes a real difference to the amount of stress your under and therefore how ill you become.

   I also think that whatever level of M.E a person has or age a person is, specialist help can give them an understanding of their illness and help them to control and manage it as best as they can. I know that even though I haven’t been able to do as much the last two years I have felt more in control and more confident and hopefull about recovering. And even if I don’t recover I know that I can manage whatever this illness throws at me.

   To anyone who has M.E I would say don’t lose who you are and remember why you are enduring this illness, for your family or friends, for yourself, to get your life back.

   Comment by Rosie Wallis on 21 May 2010 at 1:47 pm

10. I’ve had ME/CFS for 16 years since shattering my elbow (radial head bone had to be removed). I also had severe glandular fever when young (hospitalised, unable to walk, in state of collapse, off work for months). Also had pneumonia and lots of flu. Also unable to drink alcohol since the mono. Also a perfectionist/under stress. Seems to me to be a pattern. We need a champion to put our financial needs to the Benefits Agencies, and a definitive test for the illness to prove to doctors it is most definitely not all in the mind. If it were, I would have thought myself well long ago! It’s possible to manage the symptoms but it means living life in the slow lane all the time. I hate the payback days so much, I try not to overdo things (even shopping), but inevitably I tip the balance too much frequently, just trying to cope with everyday life. I have been surprised to find out how many people are afflicted by ME/CFS. We need more articles in newspapers and magazines such as these, explaining how much it ruins lives and how many people are affected by it. Seems to me a bit of a cover up, pretend it is pychological and any sympathy/understanding/financial help vanishes.

    Comment by dawn briggs on 21 May 2010 at 3:01 pm

11. I think that the description of ME is too simplistic and does not account for the wide and frightening range of symptoms (eg Passings out) and does not account for the wealth of International Scientific findings of Pathologies.

    Comment by Enid M Florence on 21 May 2010 at 4:30 pm

12. One of the reasons why research into ME/CFS has been so confused and so slow to make progress, is the issue of patient cohorts. As has been stated, ME/CFS is a diagnosis by exclusion of all other known possible diseases and as such, is a catch-all diagnosis. It is therefore entirely possible that it encompasses a range of similar but distinctly different sub-groups, each having a characteristically different cause, symptoms and onset. In this country, the NHS don’t yet test to a sufficient level of detail in order to categorise patients into these subgroups and hence, in this respect, all research to date is flawed. The more sophisticated tests that would enable proper sub-grouping, are as yet, only available within a research setting and until this situation changes, progress towards solving the ME/CFS puzzle would appear to be impossible ! (The Psychologists are very happy for this situation to remain and actively discourage more detailed testing on the grounds that it wouldn’t alter how they recommend patients be treated !!)

    Comment by Paul Watton on 22 May 2010 at 4:16 pm

13. I have had severe M.E for over 10 years, I have been in a wheelchair for about 7 years. The pain is terrible and the fatigue is as bad. The hardest thing I am finding at the moment is getting the M.E/CFS clinic O/T to understand that I cannot stop myself from so fatigued that I go like a rag doll and cannot sit/stand so need to lay down, my husband who has been my full-time carer for all these years has to hold me on the stairlift then try and keep me sitting up on bed while he tries and gets me undressed cos all I do is flop She says I must NOT lay down or rest on my bed, even though she visited me at my home cos I was too ill to travel to the clinic, and saw that I live in a small house where the only place to have a quiet place to rest is my bedroom. She tells me to read their handbook and do as it says, but I think it is geared towards mild/moderate M.E, why can she not see what I am telling her is right, its as though she dis believes hpw bad I am, even though when she was here she could see how ill I am.. Since Christmas I have been the worst I have ever been, until last week I had not been up longer than 4 hours a day.
    I agree that the article didnt go into the other symptoms and that they are very important.Agreed with all Greg said.

    Comment by Jennifer Armsby on 24 May 2010 at 6:26 am

14. For example, earlier this year, the court case of ex-nurse Kay Gilderdale hit the headlines. She admitted aiding and abetting the suicide of her daughter who’d suffered from ME for 17 years, enduring constant pain and needing 24-hour care. Towards the end, she couldn’t walk, talk or even drink.

    This was not “towards the end” but almost from the beginning. She fell ill in November 1991 and was bedridden from the summer of 1992. She became quadriplegic and lost the ability to speak or swallow at that time. She regained the use of her arms (at least partially), but her legs remained paralysed and her speech and swallowing never returned.

    Comment by Matthew Smith on 24 May 2010 at 6:01 pm

15. M.E. is so much more than fatigue and can involve a number of neurological symptoms. I became ill in 2005 shortly after stomach infection, and a flu jab which I foolishly had while still not fully recovered.

    I have myoclonus (involuntary jerking of my upper body), a spastic gait, seizure-like episodes, balance problems, cognitive difficulties (which includes problems with information processing, difficulty in learning new information, short term memory problems and problems with some executive function), problems with fine movements such as hand writing, dizziness when sitting or standing upright for too long, add to this is the feeling of being ill all of the time. All of these symptoms become worse after what would be considered to be trivial activity. I am more fortunate than many as I haven’t been be bound.

    Fatigue doesn’t even begin to describe this debilitating illness. Like many articles on ME this one didn’t go into the severe neurological problems faced by people with M.E.

    Comment by Paul Winter on 25 May 2010 at 9:06 am

16. Is M.E/CFS, Fibromyalgia, CFIDS etc all the same illness. Im sick of getting conflicting docters telling me that ive got fibro, then my pain management docter saying they are all the same thing just different names for it.

    I was dx with fibro in 2005, having had pain and fatigue for over 2 years. I was told it wasnt progressive! Since researching on the internet i think its ME/CFS that i have got.
    Im permentally in pain the fatigue is horrendus. I cant remember anything most of the time, have real bad IBS, sore throat daily, lymph nodes always swollen, balance problems, dizziness,shakes,sweats,vision problems,headaches and a perment staph face infection.

    These are just some of the things i live with on a daily basis. Ive gone from been a mum who worked, was always on the go, i was a very active full on person who enjoyed life. Now im just a physical and emtional reck.

    Its not “all in the mind” as some docters say, because i hate everyday been like this. I would give anything just to be a mum who could give the basic needs to her children again. Rather than depend on my partner to do everything for them it breaks my heart.

    Comment by Samantha on 26 May 2010 at 9:14 am

17. Peter Smith Talking Cures wrote in response too; http://www.healthy-magazine.co.uk/experts/me

    What is latest and new in ME CFS?

    Having followed ME via medical presentations, attended many local, national and international major charity ME CFS presentations including receiving information from the various and worldwide forums as well as being privileged in 2004 to attend an ME specialist investigation ward, attending ward rounds and patient conference – quite a something for a complimentary therapist – who for the past Twenty years since having a patient present with the disorder can see clearly The opening statement of the paper ME: What is the latest, (link above) clearly sets out; to the medical world ME CFS Fatigue is still a mystery, are we really to consider this is the latest for it is clear to see this is just old news.

    It appears to myself, mention ME or most disorders we as humans suffer to any person within the medical profession, they are almost all still today in the year 2010, mysteries – with the so called advances in medical understandings we are lead to believe there are, along with the advances in body imaging and last but not least Gold Standard Evidence Based Medicine, all doctors – as agents for EBM – at some time within the treatment process, throw their hands in the air in exasperation, and say “There is no known cause, no known cure or no one therapy will never be able to cure this, finely as a protection of their chosen profession, blame the patient for the treatment not working.

    Yes the dedicated doctors accept ME exists, but their own evidence tells the story “They do not know what to do with the person, let alone the many diverse symptoms the disorder presents. So why should we believe everything they say?

    Physically Draining

    Ask any sufferer and they will explain their symptoms, as they have done so in my Twenty year knowledge, yet if I look back through my own life, we have always been able to do that because tiredness is the first symptom we present during the process of becoming ill, ask any Mother and she will tell you, no mystery here! Of course illness no matter what name is Physically, as well as Mentally draining.
    Continually regurgitation of the well published symptoms is not new or a reinvention of the wheel, only a demonstration that it still goes round and around, much the same as Scientific Medical advances, are they not always changing their mind as to the cause or renaming the illness because the earlier understanding was fraught, or the research funding ran out.

    Could a virus be the cause?

    Since the first outbreak of the then Yuppie Flu in 1955 there has been suggestion of ME as it became known being caused by a virus, are we really to believe this as we are told by the medical scientist, our immune system is there to protect us from such events and repair our body and there are advances in medicines and illness understandings.
    Or is there an area we are not looking into, for to do so would not sell drugs.

    Managing Symptoms;

    As there is no known cause and Fifty-Five years have been spent treating symptoms – more so these past ten years – without success, is there not a message here, especially as it is also well reported many treatments appear to make a person worse, particularly pacing, using Rest against Activity.

    Physically draining

    How would it be if we all went about our life with a diver’s suit on, if we did this may give us an extremely small viewpoint as to how it feels having had, untreated or badly treated ME for many years? After a while all we may be is, tired, not ill, take the suit off and the tiredness will over a small period of time disappear as our body goes into repair mode.

    This is most certainly not the case for a person with ME, for they will still remain ill and or fatigued, so is pacing a good treatment to offer a person with ME.

    UN- Natural helpers

    So often either on ME CFS or medical websites there is the statement “beware of practitioners promising a miracle cure, “There is not one.” Is this not a self-fulfilling prophesy, how under these terms could any person who developed a cure or even a treatment to improve the multiple symptoms of ME – demonstrate their findings.

    Someone has to break the mysterious code of illness let alone ME CFS. Such wording can surely only come from a person that has a hidden agenda to protect and does not want a cure to be found.

    How would it be if we all still walked step by step in trepidation; because we feel this step could be the one that takes us over the edge of the world as a result of us thinking it is flat! Well done Christopher Columbus for his findings and his power in convincing the sceptics.

    Chocolate therapy

    Anything that assists a person that is ill to improve, thus enabling them to run their life more comfortably gets my support, as does Dark Chocolate, to which studies have shown it to raise the serotonin levels in the brain, If this is true, does this not raise a question; more important than eating chocolate, if indeed lack of or lowered serotonin is the problem that causes ME CFS and any Fatigue through loss of quality sleep and mood fluctuations. “What causes the serotonin levels to be lowered or made to fluctuate,” Find the answer to this with a treatment to compliment, as has Talking Cures and perhaps ME CF Fatigue will be the first illness in history to be completely eradicated.

    As an aside for a least twenty Years now the numbers of persons with ME has remained constant at 250.000 are we to believe this, or is it just a figment of someone’s imagination.

    Peter Smith Talking Cures has worked in private practice in Southend on Sea for the past twenty Seven years specialising in treatment of medical mysteries and failures and is a Talking Therapy with the ability of working with as many symptoms of mind and body a person can present at the same time, works as a partnership with the person, not a them and us situation, if the treatment is going well we take the credit if not the same applies. Talking Cures never throws the metaphoric hands in the air of not knowing what to do next, comes with NO instructions as to retraining various organs of the mind or body: no Diet changes etc etc etc. Never interferes with the persons own treatment or any clinicians treatment regime yet provides an automatic immune system response, where the person following and between treatment has to do nothing but get on with their life as best they can whilst the treatment works. Once applied the outcome from treatment cannot be avoided, albeit it is not a magic panacea or instant therapy and can come with difficult situations where help and understandings have already been given, enabling the treatment response, time to pass. Also Talking Cures can be effective over the telephone or Skype through a PC.

    Looking back now prior to 1982 having suffered for years many symptoms: Headaches, Brain Fog, Fatigue, lethargy, erratic -behavior, bowel movement problems, Backache, through accident, it now seems all too easy to understand, prior to my training to become a Hypnotherapist; I was too ill to be me, let alone a Son, husband, father, business man, brother or a friend, let alone become a therapist.

    Then in late 1982 for once in my seemingly miserable life Lady Luck came my way, serious luck. Here in Southend on Sea an advert in our local paper “Learn self Hypnosis,” Immediately I responded, Mr Steven Quinn the trainer asked me why I wanted to learn Self Hypnosis. I replied “I do not, I want to learn to be a therapist, it appeared to me this came as a surprise to Mr Quinn of the Masters School of Hypnosis who readily agreed for me to attend his course – still today a most superior array of techniques and understandings, apart for the creation of Talking Cures by myself being an extension of his teachings.

    In addition, from 1987 I have Mr Wilfred Proud foot of the Proud foot School of Hypnosis to thank for with his skillful guidance and many and brilliant teachings, amongst the many things he taught me was to be an individual therapist and not a clone of himself.

    The first thing I found out from Mr Quinn was to be the foundation of Talking Cures creation, is all illness is caused by Traumatic incidents in one’s life, at first I did not want to accept this but as the teaching sessions proceeded it became clear to me and so not only became easy to accept but became the rule by which Talking Cures has demystified the process of why we get ill and why we do not get well, as well as why the pain or illness returns in the same or attenuated form following seemingly successful treatments and is able to treat the mysteries that reside within and as a process of our mind yet NOT “All in our Mind” and body as well as my own . However not a quickly as I would desire.

    ALL IN THE MIND?

    The statement “All in our Mind” appears to me to be only made by practitioners of medicine without secure knowledge of how illness is caused, without a treatment regime that works, or a hidden financial or other agenda. Perhaps within their own mind. Failing to recognise Drugs cannot treat emotions or issues of the Mind. I recognise; I became a therapist only because medicine- and others – did not know why I was ill or have treatments – other than belittle me – that assisted me to improve let alone cure me.

    As humans we are perhaps amongst the most helpless of animals on the planet, many animals straight from the womb or egg are able to survive on their own. Not us, it takes years for us to gather the knowledge to do this, are we to consider we could do this without our mind? If No, then surely in the year 2010 we have the knowledge and courage to accept all illness is but a process of the mind that seriously affects our body. Just the same as learning to walk and is in no way to be considered a weakness, more a strength.

    Over the years one of the most significant of things I have found to be true by treating many persons, is, Illness is an advantage not a disadvantage, created by trauma (s) which seriously, negatively and permanently interferes with the body’s own and many chemicals which is designed by a process of the mind to balance the disruption to the chemical system of the body caused by trauma, thus enabling the person to live sort of with the unresolved conflict caused by the trauma. My findings tell me; this is still true if a person with any illness, hand on heart states “I have never been traumatised in my life.”

    Watch any film (Ray the biography of Ray Charles is a perfect example) and you will only see the above.

    Did not William Shakespeare say “If we do nothing, nothing gets done?” Is continually ignoring our Mind and its interaction with our body not conceding to this?

    Having survived Institutional Suppression (action by those within who are threatened) of the highest order and come out stronger I am well able to take any Criticisms and Comments which are always Warmly welcomed and politely responded to. Info at talkingcures c o u k.

    Comment by Peter Smith Talking Cures on 27 May 2010 at 9:57 am

18. My beautiful daughter Caroline (now 23) was diagnosed over 6 years ago and it is very hard thing to deal with as parents because she looks so “normal” most of the time. When she is really bad, however, she is literally as white as a sheet. When she was first ill and before being diagnosed, we were at our wits’ end and felt like saying “pull yourself together and do something”. Her elder brother (30) accepts her condition and beats himself up because he can’t help her; her other brother (who still lives at home even though he’s 28) does NOT accept her condition and it makes life very stressful. We try to support her as much as we can, but we’re now both 62 and 59 and obviously still work, so it’s like a smack in the mouth to come home after a hectic day to find the breakfast dishes still in the sink and a daughter saying “I’m tired” when we are both physically drained, but we do understand as much as we are able. It’s like all things in life – you can’t fully understand a situation until it’s happened to you – but we will always be there for her because of course we love her dearly (as we love all 3 of them) and she will always be special to us. I keep reading as much as I can and welcome any help, either medical or alternative. Caroline, with hindsight, was constantly being sent home from school with various aches and pains, or not wanting to go to school because she didn’t feel well, but we just put that down to being a kid at the time, so we don’t really know when ME started to affect her – the crunch seemed to come when her kitten was run down and left outside our house in a quiet cul-de-sac. Caroline and Tilly (officially Tahlita, the Maltese word for “mixture” as Tilly was a tortoiseshell and we were visiting Malta the year we decided we’d search for her) had such a special bond that I’ve never seen between a child and her pet, that it completely devastated her and she just hit rockbottom and has never found the way back since. So you could say “it’s all in the mind” – yes it is but no it’s not if you can figure out my reasoning! We are open to any suggestions of treatment because we want our daughter back,

    Comment by Gail Berry on 28 May 2010 at 6:48 am

19. I was diagnosed withM.E approx. 3 years ago, although with hindsight I think I may have suffered for quite a few years longer, I was always feeling ill every few wekks and had a bad sickness record at work. I remember days when I would wake up feeling paralised and couls not get out od bed, feeling exhausted and needing to stay in bed, with no energy to eat or do housework.
    My GP is very good but I feel she does not quite (get it, so to speak). Most night I do not sleep until 4-5am, and then can not get out of bed until well after mid-day, I need mega medication to sleep, if I do not get this I do not sleep, like most people I pay a price for going out for a few hours. We have given up holidays, all though I yearn for them, as our last holiday, 2 weeks in Eygpt took me 4 months to get over, christmas took 2 months, a day shopping (3 hours) takes 2 days. One of the most frightening is the paralysis, when you wake up and cannot move or speak, even though you are sometimes aware of noises around you, my husband is used to thid now and leaves me, until he gets a response, sometimes hours later. It is very frightning when you cannot swallow, also I find it worrying because M.E has so many symptoms, that you worry that you may have another illness that gets over looked, permanent headaches, sore throats, chronic pain all the time, this illness completley takes over your life and you feel so depressed you sometimes feel like giving up. I will sign off now as I am brain dead after trying to concentrate and spell words, I have had M.E brain all week so I speak my own language from (planet Zob) this our joke, as i get words ans sentences bakward.

    Regards

    Ann (I think)

    Comment by AnnFunnell on 28 May 2010 at 5:15 pm

20. The object of placing the above paper is an attempt for us as a race of people to recognise the mind is seriously implicated in making the body ill and why it does not automatically repair as the immune system is supposed to.

    To many illnesses in the year 2010 are still by the medical profession with cause unknown and no known cure. The reason is simple, they all treat the mind and body as separate, failing to recognise they are interdependent and interrelated and we can do nothing without our mind first learning how.

    It appears to me you and your family at least in part have recognised this and if your daughter is party too this and there are no illnesses that are going to take her life soon. Then with the consideration your daughter is able to work with Talking Cures – not a given- Talking Cures will be able to help.

    You have requested help therefore if you have not already done so load Skype onto your computer and type talking cures into the directory and to your contact, then contact me to discuss your daughter.

    These discussions are free of any fees.

    Peter Smith Talking Cures

    Comment by Peter Smith Talking Cures on 29 May 2010 at 7:39 am

21. My long-term severely ME afflicted son is getting much better – to the point of anticipating full recovery – due to Dr Damien Downing’s biochemical treatment approach with particular emphasis, in his case, upon Essential Fatty Acid balancing (this is not something you can do without specific & complex test data). It is now clear from John Hopkins University scientific analysis that his condition is due to underlying cell membrane inflexibility and compromised cell energy production. Correct treatment is restoring physiological self-regulation (homoeostasis) for return of normal: sleep, sweating, weight, vision, cognitive, etc. functioning and some “bounce back” capacity in the event of unintended over-exertion.
    In a nutshell, anyone malfunctioning from cell level upwards can reasonably expect the wide-ranging symptom patterns of ME – and to get worse with exertion which will obviously only stress the system further. This is plain common sense. The real question is why is the mainstream NHS so bent on ignoring the science when it should be leading it – or at least participating? The answer to that one seems to be that trivialising ME has much to do with commercial & political vested interests – and if Martin Walker’s excellent investigative journalism book on ME “Skewed” by Slingshot Publications is anything to go by it appears that a number of influential UK doctors have much to answer for in this regard. The website http://www.oneclickgroup. co.uk is a useful source for anyone interested in getting to grips with this long-standing scandal.

    Comment by Maddy Jenkins on 30 May 2010 at 12:35 pm

22. I am going through a bad period at the moment – all I want to do is sleep, although it doesn’t seem to help. If I don’t sleep though, I feel extremely ill and as if I haven’t slept for days. I feel so guilty though and try to sleep when there’s no-one around and pretend I haven’t been sleeping. I had no idea about the paralysis and getting words wrong – pleased there is nothing else wrong.

    Comment by Gwen on 12 June 2010 at 9:52 pm

23. Sorry, really tired! I meant I am pleased that my paralysis and getting words wrong is just part of my ME and nothing else wrong.

    Comment by Gwen on 12 June 2010 at 9:54 pm

24. Thank you for a fair article. I have a diagnosis of ME/CFS, but I live in the United States and I have been fortunate to have been in enough studies with biomedical foundations to know that I belong in a specific subgroup.

    I cannot pass a Romberg test. I have blackouts, expressive dysphasia, ataxia, short term memory loss and massive confusion. I have constant pain behind my eyes and my neck; headaches; and muscle aches and pain. I have to have someone push me in a wheelchair to go anywhere, and I cannot drive.

    I score abnormally on the VO2 MAX stress test and a SPECT scan.

    I have no natural killer cell function; my Rnase-L weighs 37 kD; I test positive for recurring EBV (Epstein-Barr, aka mono or glandular fever), cytomegalovirus (CMV), HHV-6 (Variant A), and HHV-7. Others have enteroviruses, parvovirus, and other documented pathogens.

    I have a dear friend who was diagnosed with M.E. in England. Her son, born two years after she fell ill, died of myocarditis at the age of 23. After years of being laughed at for having (or thinking he had) that “silly” disease “chronic fatigue syndrome,” an autopsy showed his heart succumbed to years of viral assault. The heart muscle had both old and new scarring.

    So where are the patients being diagnosed with immune disorders and viruses in the UK? They are afraid to set foot in a clinic, because of the stranglehold held by an ideology that dictates “chronic fatigue syndrome” and M.E.are caused by “inappropriate illness beliefs” and “deconditioning.” There is no money to study immune defects or viruses in patients with ME/CFS – a situation that suits insurance companies and penurious governments, but is harsh and cruel when it prevents invalids from accessing treatments that might actually help them.

    Because that is what has helped those of us in the subset I have described – immune modulators and antivirals.

    Heaven forbid any scientist might discover something that could explain the suffering of those so conveniently forgotten and left to suffer in silence by their government and their nation’s medical profession.

    Heaven forbid research funds were diverted from those who make their living on pathetic claims of “factitious illness,” “neurasthenia” (once called “the vapors”), and “somaticizing.”

    Remember: Multiple sclerosis was called “hysterical paralysis” into the 1960s, and autism blamed on “cold mother syndrome.”

    Isn’t it time to take seriously the disease named Myalgic Encephalomyelitis 55 years ago, and categorized by WHO as a neurological disease since 1969?

    One does wonder who has so much to gain by burying over 4,000 peer reviewed journal articles on the subsets and complexities hidden within ME/CFS.

    Comment by Mary Schweitzer on 30 June 2010 at 2:34 am

25. Fatigue it is not, more absolute undefineable sheer
    exhaustion.
    Ive had ME for over thirty years now it came on over night, one morning i got up went to work and felt dreadfull, tried
    to keep working but in the end had to give in to the dammm
    thing.
    The first years doctors visits one after another, blood tests
    after blood tests.
    Now i keep going only with the help of my dear wife and children who are angels.
    Plus Diazepam /venlaflxine/capsules for panic attacks/
    stomach capsules because the above upsepts my stomach.
    Laxatives etc etc.
    However i keep going in the hope that one day there is hope
    for us sufferers,and we can repay our loved ones for all
    those forced smiles and boredom, whilst we search for that one sleep that will refresh us and bring us out of this illness.

    Ohh and the holidays they have missed for us.

    PS keep your chin up

    Comment by Gordon Picksley on 7 July 2010 at 6:12 pm

26. I’ve been suffering from ME for 15 years we think and I’m still only 28! I only got diagnosed just over 3 years ago now which for me was the first step in getting better. I’ve every possible symptom at this stage, but the only thing I always forced myself to do was leave the house every day, even if it only for 10mins. Even on days that I could hardly walk or get out of bed I still forced myself out of the house. It helped me mentally to stay stronger to cope with the illness, and on better days I would meet random people for a 5min chat, then back to bed for a few hours! My doctors have said that the only reason I’m not in a wheelchair is because of leaving the house everyday.
    Diet is a huge problem for me, one day something I love to eat agrees with me, the next day I have a reaction to it and I’m back to bed for a few hours with severe dizziness! But it is all trial and error, and does take time trying to figure out what you can and can’t eat.
    We have also discovered in the last few months that my thyroid is causing a lot of trouble, but depending on the day you have it tested, it may or may not show anything!
    I now get accupuncture every 4 week and take herbal medicine from a qualified doctor as every time I take prescription medicine it sets me back a few months. The alternative treatment has helped me a huge amount, but because it is ME it all differs from person to person.

    Comment by Lindsey on 22 August 2010 at 3:21 pm

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