Comments on: ME: what’s the latest?

By: Gillian Broughton

Gillian Broughton — Tue, 14 Sep 2010 15:30:19 +0000

I have been diagnosed with ME/CFS i was exposed to pesticides and i believe this to be the cause of me being made so ill , there is no help from the NHS i have had to get diagnosed privately, i have seen several private specialists for various symptoms ME/CFS !! the only offere as been CBT and GET which i find laughable !! why would the NHS think this helps a neuroimmune disease ?
Thank god there may be a light at the end of the tunnel from the findings of the retrovirus xmrv
Which was found through the WPI in Nevada US !!!!

By: Lindsey

Lindsey — Sun, 22 Aug 2010 15:21:13 +0000

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.

By: Gordon Picksley

Gordon Picksley — Wed, 07 Jul 2010 18:12:21 +0000

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

By: Mary Schweitzer

Mary Schweitzer — Wed, 30 Jun 2010 02:34:46 +0000

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.

By: Gwen

Gwen — Sat, 12 Jun 2010 21:54:13 +0000

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.

By: Gwen

Gwen — Sat, 12 Jun 2010 21:52:34 +0000

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.

By: Maddy Jenkins

Maddy Jenkins — Sun, 30 May 2010 12:35:16 +0000

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.

By: Peter Smith Talking Cures

Peter Smith Talking Cures — Sat, 29 May 2010 07:39:39 +0000

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

By: AnnFunnell

AnnFunnell — Fri, 28 May 2010 17:15:14 +0000

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)

By: Gail Berry

Gail Berry — Fri, 28 May 2010 06:48:01 +0000

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,