Facts & Symptoms for ME/CFS/PVFS

Although progress is being made, it is unknown what the cause of ME is. It is known to have developed at the ouset of : -

• Glandular Fever
• flu viruses
• Viral infections
• Physical injury or trauma (such as a car accident)
• It is also known to just appear for no reason in some people

Studies have shown abnormalities in the immune and nervous system.

Not all sufferers of glandular fever or flu will develop ME but that these are some of the triggers in some people who have later gone on to suffer from the disease.

• Muscle and Mental Fatigue
• Malaise
• Sleep Disturbance
• Brain Dysfunction, consisting of : -
  • Short-term memory loss
  • Clumsiness
  • Struggle to find appropriate words
  • Muscle palpitations
  • Excessive sweating
  • Forgetfulness
  • "Brain Fog"
  • Headaches
• Pain (Muscle and Joint)
• Sensitivity to light/noise
• Sensitivity to temperature
• Mood swings/clinical depression
• Weight loss/gain
• Symptoms likened to Irritable Bowel Syndrome are also not uncommon
• Flu like feelings
• New or heightened effects to existing allergies

There are not currently any medical tests to determine whether a person has ME. It is diagnosed by a process of eliminating other illnesses. This process can take at least 6 months in order to rule out other possible illness through testing.

It can be a stressful period for some people, especially if you encounter an unsupportive doctor. Do not give up hope. This is going to be a period where you are not upto scratch and will need support of loved ones. If possible, try to take someone with you who can start to understand what you are going through and take notes on how to offer you appropriate support.

Being told you have a chronic illness is not something easy to accept, but there are ways to deal with it and still have the hope of a good standard of living.

Relapses are a big part of ME and it's important to expect will come. You may pass through periods where you feel like you can cope with more but by not paying attention to your body's needs, you will be preventing yourself from management and recovery.

Different things trigger relapses in each person. You will learn over time what your triggers are and when to take it easy. If managed correctly, the effects of your setbacks will lessen with time but be prepared that you may have to deal with them for some time.

It is likely you will be in contact with your GP for primary health care. He may refer you to a specialist to address the diganosis of certain symptoms. Do not be alarmed by this, it is a comfort to know you are being investigated so thoroughly.

Unfortunately there is not yet a cure for ME and can only be managed with certain symptoms addressed. Making a log of your symptoms and any patterns in your lifestyle will aid your physicians in determining which of your symptoms cause you the most distress and how address to them.

Most commonly those symptoms would be sleep deprivation, muscle pain, depression and gastro problems. These can be managed through diet, rest, pain killers, rest, anti-depresants and in case you missed out the first part, more rest. There really is no subsitute to aiding your recovery than letting your body rest.

• Sleep Disturbances

  Sleeping problems may be the bain of your life and it's something you cannot fight a great deal. You need sleep when your body wants it, but it may come at irregular times leaving your mind and body at different stages of rest. Everyone will have a different opinion on how much sleep you need or what you need to do to achieve that, but the important thing is to listen to your own body and do what you feel necessary. Don't compare your needs to those of others.

  No matter how many hours of sleep you put in, you may still wake up feeling un-refreshed. There are various things you can do to manage your pattern.

  • Try to avoid naps as much as possible. Sometimes it will not be possible to avoid them, but by doing so you give yourself the best chance of sleeping through the night.

  • Establish a regular sleeping time each night where possible.

  • It may sound obvious, but use your bedroom for nocturnal activities only and don't get used to spending all day in bed. This will help train your brain into a pattern of "Bed = Sleep".

  • Visit your GP who can refer you to a pyhsiotherapist who will some light stretches or exercises may improve the quality of your sleep.

  • Sleeping pills are an option but don't guarantee the depth of sleep. It is suggested these are used only when needed as your body may become immune to their effects

• Depression

  Depression is something that almost half ME sufferers may have trouble with. Depression is not something that M.E. should be confused with. ME is not a bi-product of depression but the other way around. Do not let any doctors try to put this in your head. It is perfectly natural that as your learn to accept the predicament of such an illness, that you come to terms with it in your own way.

  Your GP may try to prescribe you with anti-depressants and it is your perogative to choose whether to try them or not. Eeach person's preferences are going to be different. But be aware that you do have a choice and that they wont have a positive effect on all people.

  It is much more advisable that you ask your GP to be referred to either groups of people familiar with M.E. or even an inhouse counsellor who will give you the opportunity to air some of your concerns and aid you in your coming to terms with the difficulties entailed. It is nothing to be ashamed of by asking for help. By addressing your depression, you will be on the first step to managing your illness as stress and negativity are two of the largest triggers for relapse.

• Nutrition

  Correct nutrition can play a vital role in your quest for management of energy levels. There are various studies which suggest there are a number of foods sufferers of ME should avoid. There is little to no evidence to suggest anything other than a regular healthy diet will make a difference to the way you feel. However, there are certain foods which will affect the way you feel.

  Foods which contain white sugar (or refined sugar), caffeine, alcohol, tobacco products, white flour or high in fat should be avoided where possible or kept to a minimum. Foods which may cause a quick fix or a quick high also have a come down, a big low. Caffeine and sugar products may give you a boost in the short term, but the come down is so low that you will need to balance your need for a quick fix over a stable energy level.

  By contrast, foods which contain high carbohydrate (such as potato, brown pasta, wholemeal bread) and protein (meat, milk, fish) will provide high, slow releasing energy which will sustain you for longer. A body suffering from ME benefits best from eating at least a little and often.

  Although vitiman substitutes will be greatly beneficial, they should never be a replacement for a good healthy diet. The importance of a healthy, regular diet cannot be stressed enough in your attempts to manage your illness.

  If you develop signs of IBS, it's likely before you get to this point you will have consulted with your GP and/or even been referred to a specialist. Try avoiding dairy and red meats as these will likely aggrevate it.

• Pain

  Pain is something that a lot of ME patients will suffer with. It can occur in the joints or muscles and feel like it's a pain deep below the muscles. Spending a lot of time resting can also cause a build up of toxins in the muscles which can be avoided through regular exercise or stretching, or can be controlled using pain. Opiate pain killers can also assist with a regular night's sleep.

  Other known treatments which have success are professional massage, acupuncture and hydro-therapy. For more information on how to access these, speak to your GP.

• Alternative Remedies

  There are various treatments out there which have had some success in the treatment and management of M.E. It's important to note that given the pure volume of different remedies should indicate the level of heed that should be taken. If there were one remedy or cure, then it would be common knowledge.

  Depending on how much courage and money you have, it may well be worth investigating different treatments but it would be important to research the medical history and science behind any such treatment.

  Below are listed some of the more well known treatments:

  • Acupuncture
  • Anti-depressants
  • Cognitive-Behavioural Therapy
  • Graded Exercise
  • Lifestyle Management
  • Lightning Process
  • Perrin Technique
  • Veg EPA

Whether you're the wife, mother, husband, professional carer or a friend of someone with CFS/ME, there is a lot you can do to help them. Stress is one of the single most importat factors to limit for all sufferers. They will be feeling unsure of themselves, and will find it difficult to maintain their previous lifestyle and relationships in the same way as before.

How much you can do to assist a suffer depends upon your circumstances and desire to help. There are different stages of the illness and you will probably find most assitance will be needed at the early acute stages. When they don't have the energy or strength to do much, it may appear that sufferers will neglect personal hygiene and health for the sake of resting. Practical help with cooking and cleaning will go a long ways to spreading energies.

Communcation as a whole will be hard for them as their brains may not only suffering from the brain fog and fatigue, but they probably wont fully understand what is happening to them at first either. Patience and understanding will also go a long way to easing the stress that will undoubtedly be there. Although it may be frustrating to you to see someone not doing things for themselves, they will be struggling within themselves already. Even if they don't appear grateful, it's important to note that they are probably feeling embarassed and scared too.

It's important too, that you take the time to figure out what is best for you. You may not get it right the first time, in fact you probably wont. But persevere through this as there will be some light at the end of the tunnel. Lastly, it is important that you don't over burden yourself with the care of someone. Remember to take care of yourself too!

For more information, see our article on caring for someone with ME/CFS.

Hope has an important part to play in the future of an ME/CFS sufferer. Although it's doubtful that positive thoughts alone can cure an illness, it certainly has its place. Remember that there have been many illnesses in the past the doctors didn't initially understand but are now able to cure. There will always remain the same hope that one day ME/CFS will be better understood, better managed and possibly even cured.

Whatever changes happen in your life, remember there are always positive alternatives. You may not be able to work or study full-time right now, but with the invention of the internet there are many things you can do from home too. The illness may resolve within months or it may take years. The sooner you're able to adapt to your body's needs, the sooner you'll be able to discover there are many things you'll be able to continue doing!

ME Association

A Hummingbird's Guide

Action for ME

BRAME

Association of young people with ME