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Chronic Fatigue Syndrome

Myalgic Encephalopathy


Date: 01/10/03
 
Myalgic Encephalopathy (ME) is a poorly understood condition.It has been argued that some of these names, such as Tired All The Time, need to change because of the stigma attached to them that greatly undermines the condition - which for the majority of sufferers is extremely debilitating. This situation is not helped by the fact that some doctors still refuse to recognise that the disorder even exists.

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Myalgic Encephalopathy (ME) is a poorly understood condition, which is reflected by the fact that it has been given so many different labels. These include:
  • Chronic Fatigue Syndrome (CFS),
  • Post Viral Fatigue Syndrome (PVFS) and
  • Tired All The Time (TATT),
just to name a few.

It has been argued that some of these names, such as Tired All The Time, need to change because of the stigma attached to them that greatly undermines the condition - which for the majority of sufferers is extremely debilitating. This situation is not helped by the fact that some doctors still refuse to recognise that the disorder even exists.

It's hardly surprising that sufferers are often left feeling extremely angry, frustrated and let down if they have been met with this attitude after visiting their GP about their symptoms. Imagine being told that the overwhelming and persistent tiredness, painful muscles and joints, dizziness and nausea you're enduring on a daily basis are simply a 'figment of your imagination'. Unfortunately, this is a disturbing reality for many of the 25,000 ME sufferers in the UK.

While some sufferers only experience mild symptoms, in the majority of cases they are so severe that sufferers' lives are totally disrupted. Aside from those symptoms already mentioned,  ME can also cause an inability to think clearly, low motivation, disturbed sleep patterns, lowered immunity resulting in frequent infections, abdominal pains and bloating, diarrhoea, anxiety, irritability and depression - all of these symptoms are accompanied by chronic fatigue.

The effects of these symptoms can be devastating - forcing sufferers to give up work and social activities completely and leaving them totally housebound for months or even years in some cases, which can be extremely isolating. It doesn't help that it is still not known exactly what causes the condition, although many factors have been linked to triggering it,  such as a poor diet with a heavy reliance on processed foods, prolonged stress, hypersensitivity to vaccinations, artificial food additives, smoking, alcohol, viral infections and repeat courses of antibiotics.

Myalgic Encephalopathy: Orthodox drugs causes their own set of problems

Orthodox drugs can cause insomnia - the very last thing a person suffering from ME needs.

The doctors who do recognise the condition often prescribe antidepressants, such as Prozac and amitriptyline, to try and improve fatigue, mental exhaustion and depression. These drugs work by boosting neurotransmitters like serotonin in the brain, which help improve mood and feelings of well-being. However, there are numerous side effects linked to their use including nausea, vomiting, diarrhoea, headaches, dizziness, confusion... and, ironically, insomnia.

Anti-inflammatory drugs such as ibuprofen and diclofenac may also be prescribed, mainly to reduce muscle and joint pain. However, they do nothing to improve fatigue and can cause side effects such as diarrhoea, indigestion and abdominal bleeding.

Myalgic Encephalopathy: How to create more fuel for your body to turn in to energy

Fortunately, natural remedies can help sufferers make a full recovery from ME. However, it is important to realise that there is no magic cure and recovery can be a slow process that can take months in some cases. Many alternative practitioners believe that ME is the result of prolonged stress and lowered immunity, both of which can disrupt many of the body's vital functions. For this reason, natural treatments are recommended that help boost immunity, reduce stress and increase energy levels.

Recent research carried out at the Department of Neurology, Medical College Hospital in Kerala, India, has shown that many ME patients have low levels of antioxidants in their blood. In particular, their findings revealed that levels of the antioxidants coenzyme Q10 and glutathione were significantly reduced, whereas levels of toxic metabolic waste such as aldehydes, nicotine, strychnine and nitric oxide were dangerously high.

This research has helped shed some light on the possible causes of ME, suggesting that free radicals may be largely to blame.

As a regular reader of our e-alerts you'll know that free radicals are toxic by-products of your metabolism that are produced during periods of prolonged stress and exposure to pollutants like cigarette smoke. They are normally kept under control by natural antioxidants in your body, such as coenzyme Q10 and glutathione. However, low levels of antioxidants can cause the numbers of free radicals circulating in your body to increase, which is known to contribute to serious diseases like cancer and now, possibly, ME.

Coenzyme Q10 is particularly beneficial not only for its antioxidant action but also because it improves the production of energy within your cells - thereby helping to reduce fatigue.

Carnitine is another excellent energy booster. It plays an important role in the conversion process of fat into energy.

NADH (nicotinamide adenine dinucleotide), the active coenzyme form of vitamin B3, is another biochemical factor involved in energy production. In addition, it stimulates the production of certain brain chemicals, such as dopamine, which help improve muscle function and overall well-being. American researchers from the University of Washington recently conducted a study involving 26 patients with ME. Half of the participants were given 10mg of NADH a day, while the other half received placebo. At the end of the 4-week study, 31 per cent of patients receiving NADH reported significant improvements in their symptoms - including tiredness, mental exhaustion, headaches and dizziness - compared to the placebo group. As a guide, 10mg of NADH is recommended each day. However, dosage is very much dependent on the severity of your individual symptoms and your activity level - so make sure you check with your health practitioner first.

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Myalgic Encephalopathy: 4 Simple Ways To Reclaim Your Energy And Your Life

1. While moderate exercise can help, too much can aggravate fatigue.
If you over-exercise then you may set yourself back for several days afterwards and make your symptoms worse. On the other hand, not being active is equally damaging as some exertion is necessary to help build up your muscle strength and stamina. It's a good idea to begin by doing very gentle exercises like walking. Aim to walk for 20 minutes three days a week and build up gradually from there if you feel able to do so.

2. A simple but extremely effective way to combat exhaustion. It may sound like old news, but the importance of drinking adequate amounts of water really can't be stressed enough. Dehydration causes dryness and over-acidity of your body's tissues, and essential body processes slow right down - especially the removal of waste products via your lymphatic system. This causes fatigue as energy production virtually grinds to a halt.

3. A high-protein diet helps reverse flagging energy levels. A high-protein, low-carbohydrate diet helps build up muscle tissue and reduces excess weight which may contribute to your fatigue. In particular, you should aim to supply your brain with good levels of tryptophan, as low levels of this amino acid can cause tiredness, depression and mental confusion. So eat more tryptophan-rich foods like lentils, beans, seeds and nuts. In addition, make sure you avoid salt and processed foods in your diet, and cut out stimulants such as sugar, caffeine, alcohol and tobacco.

4. Take steps to reduce stress. Due to the fact that stress has been linked to ME,  it's important that you try and lower stress in your daily life as much as possible. Yoga is an incredibly powerful way of helping your body learn how to relax and ridding your mind of anxious thoughts.

Related articles:

Chronic Fatigue Syndrome: Natural Measures Can Help Combat This Debilitating Condition


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Sources:

1. Am J Community Psychol 2002, 30(1):133-148

2. Int J Neurosci 2003, 113(5):683-701

3. Alt Med Rev 2000, 5(2):93-1084.

4. Ann Allergy Asthma Immunol 1999, 82(2):185-191
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Comments

Beccie Posted 02/06/2008

I've had ME symptoms for nearly ten years! After an MRI scan last october, I was diagnosed with spinal stenosis in L4-L5 and S1.

I'm now on, MST tablets 600mg a day, 8500mg paracetemol a day, slow release diclofenac, gapapentine, and 70mls Oramorph solution a day. The pain increases daily. I'm now unable to work. I spend 3-4 out of 7 days in bed. I'm in agony all day every day. No one knows whats wrong with me.

Doctors have said for ten years it's wear and tear on my lower back and all the other symptoms are referred back pain and the severe abdominal pain is side affects of all the medication. I'm scared of my condition. No one listens and no one takes the massive affect this is having on my life seriously.

I saw a different GP this week, he thinks I may have ME. He said it's a disease that is diagnosed purely from a process of elimination. I'm starting at a pain management clinic this week. In July I'm seeing a rumatologist, for more elimination, they think! Then if no joy they are sending me to a neurologist to see if they can find anything.

Among massive side affects from all the drugs the most recent, arthritic type, painful fingers and toes when I wake up. They are reducing gapapentine but although a little less agressive in my left hand, the right is worse than ever.

Whatever is wrong with me is completely ruining my life. I would be extremely grateful for any help or advice.

emma gardner Posted 10/08/2008

I'm only 17, but for a while now (about 2 years) I got more tired which was wierd. I would always be active before.

I keep getting frequent infections, so I'm always in pain. My boyfriend always has a go at me because I'll be watching tv and just fall sleep after only being up a few hours. I've stopped seeing my friends. I get dizziness and nausea every day or every other day, but I don't know if it's because I am always ill and I have depression. I mean it's really bad but I don't know why I just get fed up.

Emsy

Michelle Smith Posted 18/08/2008

Emma - Please go to the doctor's honey - because once you have an answer - through process of elimination you will be able to control the tiredness and pain.

As for your boyfriend, if it is ME hopefully when presented with the reason he'll become more understanding - I have the same problem with falling asleep watching tv - and my ex hated it, and I didn't know why I would be exhausted - then after getting an answer in the form of diagnosis and sorting my priorities and life in general out I met a great guy who thinks it's cute I fall asleep cuddled up to him, and who has taken the time to find out how he can help me. And that is the key - whether it is ME (which it sounds like it could be) or something else - a good support system is needed along with pain relief - and at times can make you feel better than tablets could.

Jenny Nicholson Posted 28/11/2008

I am studying health and social care and currently doing a report about ME I also work for a lady every weekend as her carer, as is the lady I work for I would like to find someone else who is willing to talk about having ME and how it affects you and your lifestyle.

Thank You

Jenny

Clarabelle Posted 12/12/2008

Hello, this is message for Emma who reported having ME-like symptoms.

I'm not an ME sufferer, although I suffered greatly with autoimmune hypothyroiditis at university for 4-5 years pre-diagnosis, which has similar symptoms whilst untreated so I understand how it is to feel inexplicably exhausted and ill. Few people truly understand the effects of this condition either.

I am well now and play professional sport. I just wanted to say that you need to find a good support system and people that encourage you to get help.

Best of Luck.

Lucy Posted 22/12/2008

Recently I'v been soooo tired its ridiculous. I'll get up in the morning, and when I have finished college go straight back to bed. It's so time consuming, I'm not sure if its due to depression, because I have been suffering from it quite badly but just havent been to my GP. My motivation is very low, I have disturbed sleep patterns. I'm CONSTANTLY ill, etc.. I dont really suffer from any pains. Am I just over reacting?..

Dude Posted 28/01/2009

Yes! I agree with you one hundred per cent!

ashlee  Posted 13/04/2009

Hi I am 21 and have had M.E since I was 13 . Since I had my first child 2 years ago I had a relapse and my condition got worse I've been unable to work for 4 years and it really gets me down. I have no social life and a walk in town is so exhausting so I avoid going out much . I get extreme pain and throbbing around my knees and also a weakness very often which makes me fall asleep within 5 minutes and I feel as though I have no bones in my body.

I don't have the energy to speak when this happens or move , sometimes it only lasts up to 20 minutes but it has lasted for 1 hour , I've been to the doctors and they just keep saying its the M E. I was just wandering does anyone else have the same symptoms as me or have any advice please let me know .

Imogen Posted 19/06/2009

I am 22 years old. I have been suffering from CFS/ME like symtoms for over two years.

I am in the elimination process at the moment and it feels as if no doctors take me seriously or no one truly understands how difficult it is to give up your life to such an unforgiving illness.

I would like to say to all of you, thank you because it is the first time I have looked at anything like this and somehow it is reasuring to know there are other people out there who do understand what it feels like.

I dont fall asleep easily, infact I often suffer from insomnia, and I feel tired all the time, it feels as if my brain is swollen and I am to tired to think anymore.

I am also having tests at the moment for Lymes disease as I was bitten by a tick two years ago. It scares me because the tests are unreliable and if they treat me with antibiotics and I am suffering from CFS/ME it will only make me worse.

Can anyone share any light on what they thought the cause has been for them, have vacines or antibiotics played a part?

It feels as if the things that people take for granted in everyday life, the simple pleasures, like drinking, going out and enjoying yourself are just another contribution to the extremity of this illness.

OklahomaNurse Posted 21/06/2009

Recently I have been tested for Lupus and had stumbled apon a few websites like this. How disturbing it is to see all of your symptoms on a screen by a disease your doctor never even considered. Not once with the 3 doctors I've been to did I hear the name CFS/ME.

"CFS" is generaly scoffed at in the medical circles in this region of the country, where the attitude of "suck it up, there are people worse off than you" still is frequetly seen.

I may seem a bit bitter but it is terribly disturbing to feel as if you are dying and to have your symptoms dismissed as psychological manifestations or drug seeking behaviour without having more than the standard CBC or tests run. DOES ANYONE KNOW OF A DOCTOR WHO WILL LISTEN?

Frustrated Nurse in South Eastern OKLAHOMA.

Nic Posted 23/06/2009

I have been in and out my doctors for about 10 years now with these symptoms
*back and knee pains
*severe, crippling headaches
**dizzyness
**insomnia
**I could quite happily sleep from 7pm till 1 pm the following day and still feel tired
**I often forget what the conversation I am having is about, mid way through a sentance ...

I could go on. My docs made me feel like a complete hypochondriac. I have been told I have depression and have been given anti deppressants, she doesnt seem to understand how crap i actually feel... every bloody day!!! I am so frustrated with them not listening. I am now a single mum to a 15month old boy and sometimes, my head hurts so bad that I lay rolling around the floor crying in agony, lookin at my little boy and thinking... this is it, I dont want to leave him, my sons gonna see me die! It feels like my brains going to explode. When I try to exercise, I get out of breath within seconds and even if I walk with a bounce, it feels like theres a tennis ball bouncing round my head.. Is this possibly ME? Help!! anyone!! xxxx

imogen Posted 01/07/2009

That sounds like M.E to me, unfortunately over exercising or tiring yourself out only makes things worse.

I have the exact same symptoms, and it is as if my head will explode but I am to tired to talk about it or anything for that matter. Thinking is just to exhausting. You must insist that they refer you to a specialist at the hospital where they will run tests to rule out any other illness, its a frustrating process. But if you have a young baby you need some help, and you should be able to get some support once they come to the conclusion that this is your diagnoses. x

Concerned Posted 16/07/2009

The symptoms of ME/CFS can be caused by several different underlying triggers.

Lyme is a common, often overlooked culprit. It should definitely be suspected in cases like Ashlee's that involve swollen and painful knees/other joints, but also causes a wide range of symptoms. It is very hard to obtain a positive test result for this and to find treatment even if a positive result is obtained. Perhaps the best test these days is flow cytometry.

Getting treated, even with a positive test result, is no easy task. For those with positive tests and no access to care, search for "alldaychemist" (an Indian company selling Indian generics). Standard course would be something like Doxycycline 200 mg/day for several months with probiotics (OTC) and anitfungals (Diflucan or Nystatin - see below). (NOTE: Doxycycline kills Lyme in the brain/nervous system, but only at doses at or above 500 mg).

Candida overgrowth in the gut is a big problem in many ME/CFS patients (including Lyme patients) and can cause or contribute to many of the symptoms. Standard course is often Diflucan 200 mg/day for several months combined with low sugar diet and perhaps Threelac (which contains a bacteria that eats yeast). A follow up set of tests should be used to assess progress.

One of the main problems caused by yeast overgrowth is elevated levels of tartaric acid. Tartaric acid interferes with the conversion of fumaric acid to malic acid in the Krebs energy cycle. In addition to the toxic effects of tartaric acid on muscles, kidneys, etc., its effects on the Krebs cycle can ruin a person's day. Research suggests that malic acid (around 1800 mg/day) can be of great help for muscle pain and fatigue. It's cheap enough to give it a try even before doing the OAT test.

A logical option to try, regardless of the underlying cause of the ME/CFS, is something called transfer factors. These are small molecules made by the immune system and used as part of the process of fighting intracellular infections with Lyme, viruses and other critters. Taking them in supplemental form increases levels of critical immune cells (e.g., Natural Killer cells) and pulls the body away from autoimmunity and the Th2 dominated immune state triggered by Lyme and several kinds of viral infections. Several companies now sell transfer factors. By a basic transfer factor product and START SLOWLY. Rather than taking it daily, do it twice a week for a few weeks to minimize the chances of a significant Herxheimer reaction, which is caused by killing off too many organisms at once. Expect symptoms to flare up during the first few weeks and ride it out.

These are just a few ideas. Most importantly, don't give up hope. Regardless of whether one is in the US or the UK, our doctors have no clue how to diagnose or treat ME/CFS, Lyme, yeast overgrowth, and so on. They will aim for symptom relief (antidepressants, pain medications, and so on) which can either help or make things worse. Do well-controlled trials of things, keeping a log of symptoms and committing to at least 6 weeks on any new treatments if the side effects are tolerable.

Best of luck!!

Dude Posted 17/07/2009

It's seems that 'Concerned' decided to do a summary of the excellent articles already written on this site about CFS/ME. Perhaps a wasted effort... But please don't misinform people dear 'Concerned', there ARE doctors and help groups in the UK that does excellent work with CFS/ME sufferers - it may not be the same in the US, but over here help is available...

Nevertheless, have a look around on this site and you will find great information on the topic - the most comprehensive I have read yet.

Moira Posted 10/08/2009

My symptoms started after particularly bad glandular fever, when I was 28. I am now 54.Ever since then, any period of physical activity (of say 2 days), has left me extremely tired. 11 years ago things got worse.I think these factors were involved..taking Larium tablets, a gut bug contracted in Pakistan,and severe stress from my husband having a major break-down. I have only just had a suggested diagnosis of CFS after seeing an Endochrinologist. My current problems are stiff joints with short-lived pain if staying in one position for too long,persistent candida,wheat intolerance,sensitivity to sunlight (factor 50 in regular use),diarrhoea after alcohol.

I have felt at my best following a high protein, low carb diet and taking CoQ10, and ruling out caffeine and sugar. I find that stress makes me very tired, as does a lot of socialising. However, I am not depressed! I don't work, but keep busy. I have studied Indian Head Massage and am now a Reiki Master. Reiki has helped me a huge amount. I now accept my situation, rather than fight it.Thankyou for this web site. I have found it most illuminating, especially the listing of possible causes and predisposition to contracting CFS. It seems I had no chance of avoiding it!! I am convinced there is a link between auto-immune, bacteria, stress/cortisol levels. Let's hope someone solves the riddle soon.

Andym999 Posted 20/08/2009

I have been feeling exhausted for over two years now, I used to hold down a fast moving pressurised job, which I used to do with ease, but now I struggle to cope with a simple part time job. I wake up in the morning, get out of bed and immediately have to lie down on the sofa as I feel like I have done a hard days work! I often ache all over and always feel like I have to push myself to do anything. I have lost 3 1/2 stone over this period and thought the weight loss might help but I still dont feel like I have any more energy. Sometimes I feel that its a struggle to hold myself upright and usually lie down rather than sit. I told my doctor 2 years ago how tired I felt, but at that time my marriage broke down and he said it was depression, but I felt so tired before this and have continued to feel this way. I am lying down now as I write this and looking at the house that needs cleaning but I just dont feel like I have the motivation or the energy to do it. Im a 41 yr old man. Surely this is not normal for me to feel like this. I ahve an appt with my doctor on monday but already think before I go that he is going to tell me im stupid. My sister suggested I look up M.E. and immediately as I read it I felt like everything fitted into place but my friend said I was over reacting! Am I over reacting? am I just tired? or am I losing my mind? I often think I might be! Please, I would value anyones opinions and reassurance that im not just being stupid. Thanks for taking the time to read this

imi Posted 18/09/2009

Your definately not being stupid, as I have been made to feel time after time visiting the doctor, I was however eventually transfered to the hospital for tests, even though they mentioned M.E they said there was no way of diagnosing it and as a result no further action was made. I have gone back since and after a lot of pushing have been put on a years waiting list for cognitive therapy to help to come to terms with living with this illness. I have pretty much given up on visiting the doctor and have in time began to feel very isolated after little/ no surport from the nhs. I have tried many herbal medicines and none as yet have helped. I am 22, and at university going into my third year, I used to be very social, but have had to learn to put my studies first as i find it impossible to juggle both at the same time.

I have suffered from M.E for two years after post viral vaccinations and a lot of antibiotics in which I am certain have been the cause.

I know in a lot of cases Stress and trauma are often a trigger and I think that if you feel that may be the case for you it is well worth bringing up with your doctor.

Dont give up. Atleast if you push forward and get referred to your hospital it can help rule out any other illness with tests. I wish you the best of luck.

Referring to moira's email I also know somebody who suffered from glandular fever and interestingly she repeatedly suffered from candida. Her mother had suffered from M.E previously in her life and pushed her to cut wheat, dairy and sugar out of her diet. She is convinced this is the only way she really recovered from glandular fever as she had got it repeatedly over numeous years.

I tried recently for a month to cut this out of my diet, but am told it will only really take effect after 3 months or so and I really recommend it to everybody on here thats searching as I am for a cure, especially for people who suspect here suffering from post viral cfs, as I strongly believe you can become increasingly sensitive to wheat and dairy. Plus alcohol is a big no no.

Sorry for rambling x imi



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