The first in an occasional series being put on The ME Association website.
For four years I’ve been suffering with ME and for four years I’ve been trying to describe it to non-sufferers. I’ve compared it to a permanent flu, to a never-ending marathon, to insomnia with eventual pointless sleep.
http://www.meassociation.org.uk/content/view/699/70/
Simply a flash of lightning or a real ME cure?
THOUGH I was pleased to hear another chronic fatigue sufferer hasbeen cured by the Lightning Process, I must point out that this illness isn’t as severe as ME.
My daughter has suffered severely for 13 years. Zena Gibson mentioned that her social life declined to almost nothing (Letters). Peoplewith ME have no social life at all; it’s a huge struggle just to get through a day.
Like many others, my daughter has applied to take part in the Lightning Process but was refused treatment because she was told she wouldn’t be able to cope with it. So I’m afraid it isn’t a cure for everyone, and the battle with this terrible illness goes on.
http://www.meassociation.org.uk/content/view/705/70/
The Lightning Process – Another miracle cure for ME?
Zena Gibson (letters 20 November) believes that ME is caused by raised levels of the stress hormone adrenaline and that it can be cured by an expensive 3 day training programme known as the Lightning Process – discoveries that are worthy of a Nobel Prize. She is also convinced that ME is a disease of ‘yuppies’ – hence her use of the derogatory term ‘yuppie flu’.
http://www.meassociation.org.uk/content/view/702/70/
My daughter is 14 and has been diagnosed as having ME.
The past few months have been a nightmare as we had no idea what was wrong with her but had to watch her becoming more and more unwell without any explanation.
http://www.chestereveningleader.co.uk/12173/DEAR-FIONA-Am-I-too.4724199.jp
Emma McFarnon investigates the frequently misunderstood illness, ME
Myalgic Encephalopathy, or Chronic Fatigue syndrome as it’s more commonly known, affects more than 250,000 people in Britain alone. The neurological disorder causes severe and debilitating fatigue, disordered sleep, painful muscles and memory loss.
http://www.gairrhydd.com/features/882/the-tiredness-disease
Cort Johnson over at Phoenix Rising sent me two great links to information from a conference that was devoted specifically to viruses in chronic fatigue syndrome (ME/CFS): the Symposium on Viruses in CFS. The Symposium took place directly after the International HHV-6 Conference in Baltimore, Md. in May of this year. It featured a who-who’s lineup of speakers in CFS research including Dr. Montoya, Dr. Kerr, Dr. Klimas, Dr. Vernon, Dr. Lloyd, Dr. Peterson, Dr. Chia, Dr. De Meirleir and others.
http://www.fightingfatigue.org/?p=1644
After becoming ill, Melissa Viney had to give up her job and go on to incapacity support. Then she tried working again. But it’s not easy, she found, to escape the benefits trap.
http://www.meassociation.org.uk/content/view/682/70/
On it’s face, it might sound silly to ask if aspects of your health have improved since you became chronically ill with fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS). Some of us, though, have noticed that, while we feel worse overall, some things from before have actually improved.
You’ve probably read about chronic fatigue syndrome symptoms such as fatigue, pain and exercise intolerance, but the list of possible symptoms of this condition are far-reaching and body-wide.
If you have chronic pain from fibromyalgia (FMS), chronic fatigue syndrome (CFS or ME/CFS), or any other cause, you’ve probably been frustrated at some point with the quality of pain treatment you’ve gotten from a doctor.
There’s a good reason for that. Even though pain is the most common complaint doctors hear, most doctors aren’t terribly well equipped to assess and treat it. Why is that? During all those years of medical school, the American Pain Foundation says medical schools spend about one hour teaching young physicians to understand and treat pain. One hour, on a topic that can derail your life.
http://chronicfatigue.about.com/b/2008/11/02/the-sad-state-of-pain-management.htm
A study published in The Journal of Nuclear Medicine provides evidence of abnormal brain activity in fibromyalgia that is visible on a special kind of scan.
Many doctors, researchers and people with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) say vitamin supplements are an important part of managing your symptoms. Some vitamins have gone through double-blind, placebo controlled clinical trials and have had mixed results, while others haven’t been scientifically tested.
http://chronicfatigue.about.com/od/treatingfmscfs/a/supplements.htm?nl=1
It is not surprising that myalgic encephalomyelitis (ME), sufferers are ‘terrified’ of the new welfare reforms, according to a survey by Action for ME, which hasn’t received the coverage proportionate to the effort it must have taken to compile, nor to the effects it will have upon the people with largely invisible and fluctuating chronic illnesses such as ME.
http://www.thisisexeter.co.uk/mdgletters/sufferers-fear-reforms/article-482186-detail/article.html
Environmental campaigner Georgina Downs has won a landmark legal victory in her long-running battle over pesticides.
http://www.chichester.co.uk/news/High-court-pesticide-victory-for.4706349.jp
The Government said it will look again at its system for avoiding risks from crop pesticides after an environmental campaigner won a landmark ruling that the current measures contravene European law.
http://www.meassociation.org.uk/content/view/698/70/
“I think we’ve been taken prisoner,”, I told Ed. “Well, there’s not a lot we can do about it”, he said. Just a week before, the possibility of being surrounded by armed men would have filled me with dread but I seemed to have developed Ed’s “Oh, we’ll worry about it in the morning” attitude.
http://www.meassociation.org.uk/content/view/695/70/
When you start an exercise routine for fibromyalgia (FMS), the type of exercise you choose can make a big difference.
Numerous studies over the years have consistently shown that warm-water exercise can help people with FMS.
http://chronicfatigue.about.com/od/treatingfmscfs/a/warmwaterFMS.htm?nl=1
While doctors prescribe a lot of different medications as chronic fatigue syndrome treatments, none of them is FDA-approved for the condition. A New Drug Application, however, has been filed for the antiviral/immune regulator Ampligen.
Just as chronic fatigue syndrome (CFS or ME/CFS) affects everyone differently, so do the medications used to treat it. It’s essential that you work closely with your doctor to find what’s right for you. You should be familiar with the side effects of the drugs you’re taking, and let your doctor know about any you may develop. If you’re on more than one medication (prescription or over-the-counter), let your doctor and pharmacist know so you can avoid negative interactions.
http://chronicfatigue.about.com/od/treatingfmscfs/a/cfsdrugs.htm?nl=1
A Hummingbirds Guide
Chronic Fatigue Syndrome vs. “I Get Tired, Too”
We all get tired. It’s part of life, and especially part of modern life.
Think for a moment about the last time you were really tired at work. It’s harder to focus, harder to function, but you can push through it.
Now think back to the last time you were really sick with something like strep or the flu — too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you’re sick like that, it’s like your body just shuts down and demands that you rest.
http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm?nl=1
The CFIDS Association recently published information on Japanese research for ME/CFS treatments that have been reported to be effective for the symptoms that CFS patients experience.
http://www.fightingfatigue.org/?p=1682
Contemporaneous notes made during the talk, “Engaging With M.E.”, given by Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland, at Sparsholt College, Winchester, on Monday, 14 November 2005 for the Invest in M.E. (IiME) group. IiME organised this talk in conjunction with the Eastleigh and Winchester M.E. Support Group.
http://www.investinme.org/IIME%20Campaigning-Hooper%20Talk%20Hampshire%2014%20Nov%2005.htm
Yoga can be a good, gentle way to stretch your body and loosen up tight muscles and joints. It also helps with balance and strength, and as you become more advanced, it can provide you with a cardiovascular workout as well.
Some people treat yoga just as exercise, but when done in the traditional way, which emphasizes controlled breathing and awareness, it also can help you relax, calm and focus your mind, and deal with emotional turmoil.
http://chronicfatigue.about.com/od/exercisenutrition/a/yogaFMS_MECFS.htm?nl=1
We are pleased to reinstate the Daily Press Summary service on our website, which will provide you with a summary of recent M.E.-related stories in the news.
http://www.afme.org.uk/news.asp?newsid=380
Pilates (pronounced pih-LAH-tees) is a form of exercise that has become extremely popular, in large part because it’s adaptable to various levels of fitness. Pilates also offers a gentle, no-impact, complete body workout that you can easily do at home. It combines stretching and strengthening exercises through controlled and precise motions with the goal of toning the entire body.
http://chronicfatigue.about.com/od/exercisenutrition/a/pilates.htm?once=true&&nl=1
The deadline for comments on the draft terms of reference for the APPG Inquiry into English NHS service provision is Friday 14 November 2008.
The draft was tabled at the meeting of the All Party Parliamentary Group on M.E., which was held on 8 October.
A number of those present welcomed the Inquiry and the meeting agreed to accept the draft terms of reference in principle subject to minor amendments.
http://www.afme.org.uk/news.asp?newsid=390
Norepinephrine (NE) is both a neurotransmitter and a hormone. Also called noradrenaline, NE plays a key role in the “fight or flight” response by spiking your heart rate and blood pressure. NE is similar to adrenaline and many experts believe it helps determine your basic levels of stimulation and arousal. NE also is linked to anxiety and depression. High NE levels are associated with feelings of joy, and sometimes euphoria.
http://chronicfatigue.about.com/od/treatingfmscfs/a/norepinephrine.htm?nl=1
Do you feel lonely in your invisible illness?
Misunderstood? Frustrated?
You aren’t alone. 96% of illness is the USA is invisible. You’ve come to the right place to help create an awareness!
http://www.squidoo.com/Invisible_Illness_Awareness
We know that fibromyalgia (FMS) manifests differently in different people, and now some researchers have made initial steps toward dividing us into subgroups.
Why is subgrouping important? It could help in a lot of ways: research into one subgroup may prove to be more consistent than previous research. That could lead to treatments tailored to the subgroup, which may be more consistently effective than current treatments.
People with chronic illness “terrified” by welfare reform proposals.
A national consultation by Action for M.E., supported by the Disability Alliance and The Princess Royal Trust for Carers, has revealed that people with long-term fluctuating conditions are “terrified” that new, more stringent benefits assessment procedures and an enforced return to work, before they are well enough, could further damage their health.
http://www.afme.org.uk/news.asp?newsid=379
Do you get a horrible burning pain in your chest and ribcage? Have you thought you were having a heart attack, only to have doctors say your heart is fine? If so, you may have costochondritis.
This was actually my first FMS-related pain. When it hit, I ended up in the ER with a suspected heart attack. The doctor ruled out anything cardiac or intestinal, then poked a few spots where my ribs and breastbone come together. That hurt like crazy, so he said I had an injury there and that it would heal in a few days.
http://chronicfatigue.about.com/b/2008/10/16/fibromyalgia-costochondritis-pain-in-the-chest-ribs.htm
New guidance from the UK Department of Health provides a comprehensive list of conditions where treatment with immunoglobulin may or may not be appropriate.
CFS, which is listed under neurology, is a condition where immunoglobulin is NOT recommended.
http://www.meassociation.org.uk/content/view/682/70/
A major change in work related benefits for sick and disabled people takes place on Monday 27 October with the introduction of the new Employment and Support Allowance (ESA). The new benefit is likely to make it harder for sick and disabled people to claim work related benefits, and the aim is to significantly reduce the numbers of people claiming work related benefits.
http://www.meassociation.org.uk/content/view/685/70/