Symptoms of Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome (PVFS)
A few years ago, I spoke to Dr Dowsett on the phone several times and was disappointed to find that although she is still as active as possible, and continues to be a great champion for M.E. sufferers, she is getting on in years and finds things particularly hard since the death of her husband and various colleagues who were a great source of inspiration and support. M.E. is a dreadful illness to be working with. Not many doctors really want to know, which is what makes her so special. She deserves a medal and much greater recognition within the medical profession. Dr Dowsett, currently Patron of the S&W Group and 25% M.E. Group, is a terrific person and a mine of information who worked with the late Dr Melvin Ramsay, a British doctor who defined M.E. over 50 years ago. Dr Dowsett inherited thousands of Dr Ramsay's patient files and, to this day, continues to maintain that M.E. is caused by an enterovirus, Coxackie B. Having read a great deal on M.E., over the past four years, I feel sure Dr Dowsett is correct. Recently, she rang S&W Secretary Peter Ruberry (also an M.E. sufferer) to correct two statements made in the group's February newsletter. One of the statements said:
"The most common cause of ME/CFS is thought to be a viral infection related to polio (a whole family of viruses which affect the muscles and brain)."
Dr Dowsett avers that this is the ONLY cause of [correctly defined] M.E.
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For the past two years I have subscribed to the S&W Group and receive its monthly newsletters via land mail. The Group has 150 members but not everything it publishes is useful for severely affected M.E. sufferers.
For those with severe M.E., I highly recommend the 25% M.E. Group, which I joined 3-4 years ago. If it weren't for them, I would think I am the only person in the world suffering as I do. Through the group, I now know there are 800 others in exactly the same situation as myself. Without each other, I think we would all feel like we were going mad. Just knowing there are others out there, experiencing the same things while knowing there is no treatment or cure - and no real good research being done in a big way - helps in a way that is very special. We are all in the same boat, experiencing the same problems, battles, ignorance and lack of understanding or appreciation what it means to be struck down with such a mysterious and complex illness.
My heart goes out to the thousands of fit young soldiers who were struck down and became profoundly disabled by Gulf War Syndrome. They experience the same as us suffering from severe M.E. and also get little understanding or sympathy because nobody can really appreciate the day to day battles of living with such a devastating long term illness. Being disabled is one thing but being disabled and ILL is altogether different. I've said it before: I'd rather have both legs chopped off than this: at least with only two legs missing you can adapt and LIVE, get around on false legs, in a wheelchair or whatever, play sport and get involved in things that are invigorating, life giving and useful to others.
Today, on reading Shropshire & Wrekin's March newsletter, I found the following snippets that should prove useful to newly diagnosed sufferers.
Symptoms of Myalgic Encephalomyelitis
Information courtesy Shropshire & Wrekin M.E. Support Group:
N.B. Not all these symptoms are normally present at one time - symptoms are variable.
A feeling of unnatural fatigue, muscles like lead, unable to lift arms or open a cupboard door at times.
Easily exhausted, inexplicably tired, sometimes first thing in the morning. Also after any exertion, however slight.
Sore throat, loss of voice control, dry sore mouth, ulcers in gums.
Drinking more frequently than usual.
Poor circulation. Cold extremities. or perspiring excessively.
Pins and needles in fingers.
Glandular swellings in any areas. (Above or below the belt).
Legs giving way. Painful joints. Burning muscle pains, maybe patchy.
Unable to move feet properly, dragging one behind the other.
Heart palpitations. Panic attacks.
Backache, top to base of spine. Localised pain, diaphragm, neck and chest.
Urinary infections, (possibly indicative of Candida or Cystitis).
Needing to visit the toilet more than usual.
Stools wrong size and shape, thin, small pieces, diarrhoea or constipation/ often watery discharge from anus.
Swelling of the stomach, bloating flatulence, indigestion.
Pallor of face. Dark circles round the eyes, or underneath.
Severe hunger, or alternatively/ not wanting to face food.
Forgetfulness, a feeling as though mental faculties are impaired.
Loss of concentration.
Short-tempered, even though usually placid. Too ill to cope, cannot be bothered.
Headaches, inflamed eyes, (itching, red, swollen area around lids) Blurring of vision, dizziness.
Feeling of despair, even to the point of being overcome by suicidal thoughts. (In some cases, doctors have failed to recognise this as a genuine part of the illness, and have told patients to "Pull themselves together-get out more-get a part time job, etc") This is stressful to the patient, and in fact the opposite of what they should do. Rest, rest and more rest is required. In the case of actual suicides, it has often been because patients have not had the correct advice.
Not wanting to meet people, or having the energy to dress and go out.
A feeling as though the patient has a permanent 'flu-like' illness head like cotton-wool.
Hyperacusis, an abnormally acute sense of hearing, can't stand noise.
Tinnitus, ringing in the ears.
Inability to digest certain foods.
Reactions to chemical sprays, odours, etc.
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Myalgic Encephalomyelitis and Post Viral Fatigue Syndrome (PVFS)
By Peter Ruberry (Group Secretary) Shropshire & Wrekin M.E. Support Group: Guidelines, based on personal and others' experience.
PVFS commonly follows an attack of flu, severe cold or other viral infection. It can last for a few days, weeks or months. Symptoms may include headaches, general muscle pain, feeling faint, lack of concentration etc. It is important to take adequate rest in the early stages as this helps the body to overcome the infection.
If such symptoms last beyond six months it is possible that the condition has developed into ME, or what some doctors now call Chronic Fatigue Syndrome (CFS). It is believed that the viruses, which initiate the problem, persist in the brain cells, and in muscle cells in 70% of cases. There they become modified 'so as not to unduly disturb the body's immune system'. During periods of remission the viruses lie quiet and don't cause symptoms. But stress, trauma, accident, over-exertion, immunisation or another infection can upset this balance and the virus and immune system become re-activated, causing a relapse and return of ME/CFS symptoms.
ME is not an immune deficiency disease like AIDS
The virus concerned does not generally cause tissue damage, so none is detected by normal laboratory tests. This is the cause of the frustrating lack of proof that we are physically ill and why so many doctors have been sceptical about the illness. However special research techniques have shown that viral material is present within tissues and SPECT scans have demonstrated restricted blood flow to the brain and damage lesions in certain vital brain areas. Even if they were generally available these tests could only support a diagnosis based on clinical symptoms and case history; they cannot be used on their own to diagnose the illness.
KNOWING THE ENEMY
The best way to cope with ME is to UNDERSTAND what is happening to your body and realise that you are NOT GOING MAD. It is NOT a fatal illness and, given time, you stand a good chance of making a considerable recovery.
Joining your local self-help group and the 'ME Association' or 'Action for ME' will provide you with the latest medical and research findings and news about ME. You will also find that you are not on your own, but can contact directly local sufferers, who have a wealth of experience of coping with the illness. There is also a free Group library service, which comprises books, cuttings, sound- and video-tapes on the subject of ME.
There is no known magic cure for ME, so it may not be helpful to spend a fortune chasing private treatments. However some self-help and changes in lifestyle can relieve symptoms and eventually help the body come to terms with the virus. As with chicken pox, measles etc. the ME/CFS viruses will remain in the body life-long.
REST AND AVOIDANCE OF STRESS is important, especially in the early stages. Tapes or courses on relaxation benefit many sufferers. (Stress can be mental or physical, even including climatic changes). On your better days you may be able to manage more physical and mental activity, BUT ME sufferers are usually operating very close to their energy limit and this must not be exceeded or RELAPSE will occur.
CHANGE of DIET may help. You may find certain foods worsen your symptoms. All stimulants should be avoided including ALCOHOL and CAFFEINE. Drink plenty of fluids, e.g. water, fruit juices, herbal teas, 1'Caro", 11Barleycup". Try to eat fresh foods without artificial additives, colouring and sweeteners.
Animal fats tend to encourage viral growth which destroys Essential Fatty Acids, whereas unsaturated plant and fish oils replace EFAs and help the immune system. [Evening Primrose and cod-liver oils taken together daily help restore the correct balance of EFAs. In one scientifically controlled trial, financed by the 'Efamol' company, they were found to improve symptoms in over 80% of ME sufferers].
Some ME sufferers have considerable '1irritable bowel" symptoms, due to disturbance in the autonomic nervous system. Reducing animal fats and refined sugars and increasing starch and fibre in the diet often helps.
(Brown rice, wholemeal bread*, potatoes and cereals* are good sources)
**Some ME sufferers are unable to take foods containing wheat; in others, dairy products must be avoided. Such sensitivities and/or allergies can only be determined by trial and error. Your GP may be able to help or refer you to a dietitian.
Due to viral damage to the hypothalamus (a vital part of the brain which controls hormone output), production of certain growth hormones are reduced, rendering ME patients resistant to insulin. This can cause sudden drops in blood sugar levels and feeling wobbly and strange if you miss a meal, or following a sudden burst of activity. A sweet snack or drink will quickly restore blood sugar levels, but a slice of toast or digestive biscuit is advisable to stop the sugar level crashing again.
Eating a good diabetic diet, i.e. regular meals containing plenty of starch and slow-release natural sugars, found in fresh fruit and vegetable, will help reduce episodes of low blood sugar. Refined sugars can lead to rapid fluctuations in blood-sugar levels and symptoms of hypoglycaemia. They may also increase susceptibility to Candida (a fungal growth in the gut) which can cause thrush. Unsweetened, LIVE Yoghurt, eaten daily may help restore gut flora, especially after antibiotic treatment.
[+ NB. Some private dietary practitioners can be very expensive. Some also seem to have a tendency to diagnose multiple allergies in most patients and prescribe very restricted diets which can be difficult to cope with and may even be dangerous to ME sufferers.)
You may be very sensitive to strong-smelling chemicals like perfumes, paint, petrol and TOBACCO SMOKE. Pesticides may also cause problems. Your hearing may fluctuate between intolerance of noise and near deafness. Tinnitis is sometimes experienced.
Fluctuating vision problems are common and are probably due to fatigue in the optic muscles. An eye test may be advisable to eliminate other causes of severe problems.
YOUR GENERAL PRACTITIONER
He/she is a vital link in aiding your recovery, and holds the key to Sickness and other Social Security benefits. If you have a sympathetic GP you are fortunate. If s/he does not believe in ME you may need to consider changing doctors.
However, even the most supportive GPs and consultants are frustrated by the nature of our illness.
They have no simple diagnostic tests to confirm ME but can only make a diagnosis based on a full case history and the pattern of symptoms. It will help if you write down ALL your symptoms and keep a diary of how you feel from day to day. It is so easy to forget important facts when you go to the surgery; you may then describe only the one or two problems that are prominent at the time.
Your GP may need to carry out a number of investigations to eliminate the possibility of other illnesses with similar symptoms (which may be treatable and could be life threatening).
Your doctor can help you most by listening and believing you, which will help you psychologically. Physically s/he may be able to prescribe treatments/drugs to alleviate the most troublesome symptoms. E.g. painkillers may help with muscle pains and headaches, and other drugs may assist the circulation and balance problems.
These can be essential to treat true depression, which affects some ME sufferers. But their main benefit is to help you get a good night's sleep. The tricyclic group, such as prothiaden and amitriptyline are often the most beneficial. ME sufferers can usually only take these in low doses (not the levels appropriate for people with depression). It is believed that the benefit of these drugs to ME sufferers is their antihistamine effect. You may find "Piritont' which is sold over the counter for insect bites etc. may be helpful in this respect.
Some ME sufferers find osteopathy, chiropractic, acupuncture, herbal remedies, homoeopathy, etc. to be very helpful. Some GPs offer such remedies themselves or may refer you on the NHS. If you take any such treatments privately or "over the counter" it is vital to inform your GP, since some "natural" products may adversely affect the potency of prescribed medicines. Some "remedies" may even be poisonous, e.g. Germanium, tryptophan, some Chinese herbal remedies.
These are best avoided whenever possible, since people with ME can react badly to their use. Always explain to your anaesthetist that you have ME should a general anaesthetic be required for an operation.
If local anaesthetic is required for dental treatment ask for ADRENALIN-free ~ 'CITANEST' to be used.
BENEFITS AVAILABLE (NB. This is for general guidance only)
If your GP considers you are unfit for work (and you have paid enough NI stamps (in the last year) you may get INCAPACITY BENEFIT at LOW rate for 26 weeks, MIDDLE rate for the next six months and LONG TERM rate from 12 months after you last worked. This lasts as long as your GP issues regular sickness certificates (and you pass periodic DSS medicals).
If you have not paid sufficient NI contributions (e.g. if unemployed or full-time housewife/mother) you may claim Severe Disablement Allowance if you are under 20 when first ill. If you are over 20 years old you must be classified 80% disabled to qualify. Proposed new legislation may stop this benefit for those over 25.
If you cannot qualify for any of the above you may be able to get INCOME SUPPORT, even if you have some earned income in the family. (DLA - see below - does not count as family income in calculating your entitlement). Income Support also entitles you to free milk, school meals, dental and optical treatment and free prescriptions. Help with Council Tax and Rent may also be available.
[Leaflets are obtainable from Social Security and Post Offices.]
DISABILITY LIVING ALLOWANCE - DLA - (UK Tel. 0800 882200 for a claim pack)
If you are under 65, in addition to the above, you may be entitled to one of THREE levels of benefit to help with CARE in the HOME and/or one of TWO levels of HELP WITH MOBILITY. You may qualify for payments (to buy care or transport) even if the care or transport you need is not readily available. This benefit does not require NI contributions.
The highest rate for care in the home may also enable you to receive INVALID CARE ALLOWANCE.
The higher rate of mobility payment also provides free road fund licence and a blue badge* (which allows for "disabled parking" facilities) for any car you travel in. You may be able to get a blue badge if your doctor is willing to endorse your application, even if DLA is refused. *Orange badge before April 2000.
There are various Government schemes to help those on Incapacity Benefit to return to work. It may be possible to get "therapeutic earnings" while receiving IB, if you are only capable of part-time employment. Also a "tax-rebate scheme" has been introduced to help those unable to earn high wages due to infirmity.
Consult your GP about these benefits before you make any decisions about returning to work.
COMMUNITY CARE ACT APRIL 1996
This Act is considered to be one of the most significant developments in legislation for those who care for sick and disabled people. There are two main provisions:
- Carers now have the right to ask for a formal assessment of their ability to care for someone else.
- Local authorities have a duty to take this assessment into account when looking at the kind of support that needs to be provided for either the carer or the person cared for.
This applies whether the carer is caring for other adults or sick/disabled children. The carer does not have to be living with the disabled person, nor need he/she be the sole carer, as long as they provide a regular and substantial degree of care.
Don't wait until you are no longer able to cope. Apply for assessment as soon as the caring starts to take up a significant degree of your time and energy.
Apply to your local social security department who will then make an appointment for an assessor to visit your home. You can get a leaflet, 'How can I get my carers assessment' from Carers' National Association - 0171 490 8898.
Following assessment you should receive a full written report on additional help required, e.g. meals on wheels, domestic help, and day/night-sitting service to provide regular respite breaks.
A recent CNA survey showed that 55% of applicants had their care services increased following assessment, so it is worth applying.
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DISCLAIMER NB. The accuracy and currency of the above information cannot be guaranteed. You will need to check with your GP, the DSS, Citizens' Advice Bureau etc. to check what benefits etc. may apply to you.
I hope you find these GUIDELINES helpful. Please don't hesitate to contact me if you need further help.- Peter Ruberry.