do you have a friend or relative with ME watch this video

Thanks for posting that Eleanorre

I was diagnosed eighteen years ago by a very enlightened neurologist - so lucky because back then many medical professionals still regarded it as "all in the mind" or depression!

Comments I've had about it from people I've met over the years were along the lines of "isn't that when you get tired a lot?" Oh, if only!!!

The exhaustion is so total and can be very sudden. I liken it to someone removing an electrical plug from a socket! I've literally had to sit on the pavement and ring for a cab to get myself home from a very brief visit to town. I've had to be carried from a car to the front door because those few yards were beyond me.

The list of symptoms is huge and varies from person to person. They are also very unpredictable! Some people make a good recovery, others seem to be stuck with it

As was touched on in the video, there are no obvious outward signs, so to others you look perfectly well. What they don't realise is that, if you're out and about, it means you're having a good day - it also means that you'll pay the price of having several bad days recovering from it!

It's also very isolating, if you're not careful, because working/socialising can be very difficult and limited.

The life change can be massive, going from a very busy working life etc to being out of the loop.

I consider myself very lucky, I was only bedbound for a short while. My life is very limited, but could be so much worse! I find ways round doing things, take shortcuts - it's a great excuse for housework not getting done, I'm nothing if not a positive thinker

Very good link. Thank you, eleanorre. It particularly resonated with me when he said he'd had to tell his doctors that he knew what was like to be healthy and fit. I think it was my snapping back at my GP, when I thought he was dismissing me as a neurotic menopausal woman: "You don't know what I'm like!" I hadn't been with that GP for long as we had moved house. I was almost in tears, which he would have seen.

It brought him up sharp. Since then he has been much more polite, and it was shortly after that that he diagnosed ME. It can't be easy to diagnose, especially when symptoms are so weird and so varied.

So, yes, a very useful video.

Apologies for this post being so long, but it saved doing a link which some of you don't like!!

For those of you who know someone with ME, I hope this will give some insight!

The info below is from the Hummingbirds' Foundation for ME website

Having said that, here's a link as well:

www.hfme.org/themesymptomlist.htm


ME SYMPTOMS

Myalgic Encephalomyelitis (M.E.) has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disease. It can occur in both epidemic and sporadic forms.

M.E. is not medically unexplained or untestable and is not the same thing as the wastebasket disease category of 'CFS' (or 'ME/CFS'). Fatigue is a symptom of many different illnesses - but it is not a defining symptom of M.E., or an essential symptom of M.E. What defines M.E. is a specific type of viral damage to the brain.

M.E. is a multi system disease which is characterised by post encephalitic damage to the brain stem; a nerve centre which controls all vital bodily functions - this is always damaged in M.E., hence the name M.E. Inconsistent CNS function is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process. M.E. represents a major attack on the CNS by the chronic effects of a viral infection which targets the brain: an enterovirus.

M.E. has a sudden/acute onset that is often very dramatic. Many patients can tell you not just the day they became ill but the hour. M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. M.E. is a loss of normal internal homeostasis. M.E. is secondarily a vascular disease and the vascular and cardiac dysfunctions seen in M.E. are also a major cause of much of the disability associated with M.E. More than 60 symptoms have been authentically documented in M.E.

M.E. is associated with signs and symptoms including (but not limited to):

Neurological signs and symptoms:

Inconsistent central nervous system function

Vertigo, disequilibrium and proprioception difficulties (e.g. lack of sense of 'up' and 'down' with eyes closed)

Temperature dysregulation and poor tolerance for hot or cold environments

Hyperacusis (sensitivity to noise) and photophobia (pain/relapse on exposure to light)

Pain and pressure at the back of the head (where the head meets the neck) and behind the eyes

Blurred vision, blacked-out vision, nystagmus, wavy visual field, and other visual disturbances

Stroke-like or coma-like episodes

Seizures and 'sensory storms' (while conscious)

Sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm

Many other varied neurological symptoms and abnormalities

Vascular and cardiovascular signs and symptoms:

A very high heart rate, chest pressure, heart pain and a fluttering/straining heart

Very low blood pressure particularly when upright (e.g. 84/48 or less in an adult at rest), orthostatic tachycardia/POTS and reduced circulating blood volume (up to 50%)

Feet burning painfully and turning blue/purple on standing (Reynaud's phenomenon)

Pain/discomfort/poor digestion following meals

Muscular signs and symptoms:

Muscle weakness and paralysis (affecting all muscles including the heart, eyes, digestive system etc.)

Muscle pain, twitching and uncontrollable spasms

Difficulty breathing and air-hunger, difficulty swallowing/chewing

Paresthesias, polyneuropathy or myoclonus

Cognitive signs and symptoms:

Word-finding difficulty, scanning or disjointed speech, speech reversals, difficulty or an inability to speak

Difficulty comprehending speech or delayed speech comprehension

Handwriting changes, difficulty writing or comprehending text

Difficulty with even basic mathematics (dyscalculia)

Difficulty with simultaneous processing, concentration, spatial perception and with sequencing

Difficulty making new memories, recalling formed memories and with immediate and delayed visual and verbal recall (e.g. facial agnosia). There is often a marked loss in verbal and performance IQ

Other signs and symptoms:

Nausea, vomiting and feeling 'poisoned' and very ill

Throat and gland pain/tenderness, chills and low grade fevers

Food allergies, alcohol intolerance, hypoglycaemia and sensitivity to common drugs/chemicals

Ghastly pallor of face with frequent lupus-like submaxillary mask or facial vasculoid rash

Parkinsonian rigidity of facial expression


What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. It is unique in a number of ways and must be present for a correct diagnosis of M.E. to be made, and includes the following:

People with M.E. are unable to maintain their pre-illness activity levels. This is an acute, sudden change. M.E. patients can only achieve 50% or less of their pre-illness activity levels.

People with M.E. are limited in how physically active they can be but are also limited in similar ways with cognitive exertion, sensory input and orthostatic stress.

When a person with M.E. is active beyond their individual limits, there is a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.

The level of physical activity, cognitive exertion, sensory input or orthostatic stress (being upright) that is needed to cause significant relapse varies from patient to patient, but is often trivial compared to pre-illness tolerances and abilities.

The severity of M.E. waxes and wanes throughout the hour/day/week and month.

The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours or more later.

The effects of overexertion can accumulate over time and lead to disease progression or death.

The activity limits of M.E. are not short term: an increase in activity levels beyond a patient's individual limits, even if gradual, causes relapse, disease progression or death.

The symptoms of M.E. do not resolve with rest. There is also a base level of illness which can be quite severe even at rest.

Repeated overexertion can harm the patient's chances for future improvement in M.E. Patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.

Not every M.E. sufferer has 'safe' activity limits within which they will not exacerbate their illness: this is not the case for very severely affected patients.


30% of M.E. patients are housebound and/or bedbound and are severely limited with even basic movement and communication. Cognitive disability can be very pronounced in M.E., just as much as can physical disability.

This information is based upon an enormous body of clinical information and research. Although M.E. can cause many different symptoms the major features of epidemic and sporadic M.E. are distinct and almost identical from one patient to the next. M.E. is a severely disabling, distinct, easily recognisable and testable disease entity.

Thank you for this post and link Eleanorre - my DD has ME/CFS and Fibromyalgia and her life is very difficult. She is a single parent with a 6-year-old and has ben struggling to work (she is a teacher). She has had to cut her working week to two days which will make things difficult for her financially. She has had this for over 6 years now - it emerged just after her daughter was born - to my mind it is getting more severe. She has an excellent Consultant who is very empathetic, he has many years of experience and I don't know what she would have done had we not found him. She is going through a particularly bad phase just now - as you say this condition is 'life-changing'.

I have lots of these symptoms and it was suggested as a diagnosis several years ago. I was referred to a consultant who gave me a 2 minute interview and a cursory listen to my chest and referred me to the ME "team." The person I saw was a physio who just said I should do neck exercises, which I did and was in agony and could hardly turn my head.

Then they sent me to a counsellor (who was vast - truly obese poor woman) and she just kept telling me my immune system was compromised (how she knew that I do not know) and also that I should change my GP. (why?). She then sadly became quite ill and I never saw her again nor heard a word from the "service."

I a having a repeat brain MRI on Thursday as the balance problems and giddiness are so persistent. I will awat the result.

Luckyg That was appalling treatment! All too common, I think

My balance is rubbish - ironic seeing as I did ballet for years (not professionally!)

jogginggirl I'm so glad your DD has a good Consultant, it must be very reassuring to all of you.

It's so tempting to try and carry on as 'normal' when you have a good day, but then inevitably pay the price. Your DD must be having a hard time, especially with finances to worry about as well. Has she applied for ESA? if not, it may be worth looking into, especially if she's in danger of a relapse.

It is reassuring MiniMouse - but I hate to see life passing her by in this way DD is in the process of applying for PIP - she has an interview with them later this month - I do hope she can get some help - obviously the pressure that she feels surrounding her financial state - causes stress which only makes matters worse She is very brave and tries to remain optimistic but it can be tough! Everything you say and describe in your post is sadly familiar. Sending you best wishes and X

jogginggirl Thanks for flowers

I'll pm you some info!

MiniMouse Thank you

DD2 has ME, there are more people suffering with this than anyone thinks.

Yes, I think you're right rosesarered It seems to constantly slip under the radar. Very little research done until more recently. Makes me wonder, being of a cynical nature, who's afraid of what being revealed about the cause/s!

My husband had to retire from full time teaching 26 years ago with ME. At its worst he was bed bound and could not even lift his arms to hold a pen or put his own clothes on. In a way he was lucky because it was diagnosed quickly. Unusual at that time. Fortunately he made a gradual improvement . Several years later he was able to return to teaching for two days a week ...admittedly at a very easy to teach at school. He could not do much for the rest of the time as he was too exhausted. He retired fully a couple of years later. He still does not have the energy he used to have, but then he is much older now!

We feel that his improvement owed much to going totally organic and also taking Selenium ACE supplements.

Our garden borders a field and sometimes after spraying the flu like symptoms reappear for a few weeks. (Luckily he does not seem to spray as much now).

The ME has also seemed to trigger a lot of food intolerances so every packet has to be carefully scrutinised.

Just thought I'd post because the organic and the selenium might be worth trying for anyone else suffering.

Diagnosed with M.E. 25 years ago with fibromyalgia added three years later. I have experienced the life changing symptoms others describe to a lesser or greater degree since. I think I've been so lucky. My employer at diagnosis was so supportive. My already part time hours were made totally flexible. If I could only manage an hour that was fine. Lifts were arranged. I owe them a lot. As time went on my profession supported self employment so I could be in control and pace. Medical care has mostly been supportive and informed. My head knows that overdoing things and not pacing will trigger a difficult several days. My heart says sometimes I just want to do something and now I've retired I can - and rest as long as I need to afterwards. Environmental factors are highly significant. Friends know to remove air fresheners before I arrive and I am excused decorating. Gloss paint and sealant trigger relapse. Organic fresh food helps energy, when I eat less carefully - and sometimes I just 'want' to - I do notice. I have found support from a nutritionist invaluable and still see one when I have a relapse. It's a still misunderstood illness. I wonder sometimes if there is shame attached to it. An invisible impairment much of the time which has benefits but can make others 'forget' we have to manage things differently. As has been said we manage it, adapt and live to the best of our ability. for everyone affected. Whether we have the illness or support someone with it life can be a challenge. I'm lucky I can do most of what I want to by adapting how I do it but I know many are more seriously impacted.

Yes, I'm sure organic foods are beneficial, too. The fewer pesticides/chemicals the better!

I've recently gone gluten free as well to see if it helps. Too early to be sure, but I do seem to feel brighter somehow.

As you say, adapting is the order of the day!

My DH was diagnosed with ME about 23 years ago and eventually gave up work as he couldn't cope anymore. It was a very traumatic time and I have every sympathy with all those who suffer from this dreadful life changing illness. I realise each case is individual but to try and give some hope to those who are suffering I would like to say that my DH and I have a good lifestyle now. Whilst never regaining the full mental and physical health he had before, we have adapted and enjoy a slower pace of life now. To all those who have ME do not give up hope, life can still be worth living and time can bring considerable improvement.

Some lovely, thoughtful and helpful posts on this subject of ME/CFS/Fibromyalgia. I am storing it all and hope to be able to help my DD with what I am learning. Thank you all xx

I'm going to look into this further. The symptoms seem familiar and I keep thinking "if I just get some more rest" or "if I lose some weight" or "if I ate such and such" but nothing is making a differnce. I'm in pain now, waiting for tablets to take effect so that I can sleep a little. It needs investigating, if I have the strength to fight for it.

So sorry to hear of your pain rubylady - if you can find the strength please do look into this - do you have someone who can go to the doctor with you...? Having a friend/relative alongside might help if it's difficult for you to explain your symptoms. It did take a while for my DD to get diagnosed but along the way, many other conditions/illnesses were discounted, e.g. M.S., Thyroid problems (although this is still a possibility); rheumatoid arthritis, lupus and others. I hope you find the strength and energy to start the process xx

I'm sorry, too, rubylady It might be an idea to write a list of your symptoms and take it with you when you visit your doctor - it's easy to forget things, especially if you're at all anxious and in pain!

My DD is on a wheat and gluten free diet and drinks no tea or coffee, she says this does help, but of course not everyone could bear to do this!
if she has had a busy day, she needs a couple of resting days afterwards.

I do believe attention to diet helps roses - my DD does her best but with a six-year-old and trying to work - there is often little energy left for much else at the end of her day - I know you will understand that. I agree on the 'rest days' - and try to encourage them at all times! Best wishes to you and your DD

I didn't realise so many of us have, or know someone, with this debilitating illness.

I was diagnosed in 1996 by a psychiatrist that the neurology dept at HRI had insisted I see. The policy of the department at that time was that ME did not exist and therefore refused to accept the diagnosis. The consultant discharged me. It was at this point that I asked him if, when he qualified, he had sworn the Hippocratic Oath. He replied that he had. I then told him he was breaking his oath as he had sworn to help sick people and that even though I was obviously ill he was refusing to help me. Needless to say this went down like a lead balloon. He wrote to my GP complaining about my attitude. Fortunately my GP believed in ME and believed I had it so, apart from asking me to be a bit careful in what I said to consultants as I might need to be referred again at some point, she took over my treatment such as it was. Basically she signed me off sick for about a year in all as I rested and recharged.

I'm fortunate in that not only did that help but I discovered that when my energy levels are dropping my lips start to tingle. This gives me to chance to act before they drop too far. Doesn't work every time but definitely helps.

That's really interesting Vampirequeen, I get the tingly lips and often my whole face tingles. Thought it was just me! Sorry you had such a time with the consultant, thank goodness for the GP. I found early on that I got angry with the term 'ME' - this horrid illness isn't me - I am more than it. Just an odd thing I know, not clinically accurate maybe, but it helps me see past it. Currently Mindfulness helps me, as does homeopathy (NHS consultant) although I know it's controversial, also lots of Vitamin C, pacing is essential. It's such a complex illness. Worth keeping an open mind, I try anything that won't do me harm!

cornergran That's interesting that you've tried mindfulness because I go to Yoga Nidra which is very gentle stretching, proper breathing, followed by mindfulness meditation. I emerge from practice completely zombiefied (is that a word?!) which lasts for a couple of days, but it definitely impacts my body in a very positive way - it's as though it releases something, if that makes sense. Acupuncture and cranial osteopathy are also brilliant, but I can't afford to do them on a regular basis!!

vq What a dreadful way to be treated by a consultant I know that I was very fortunate to have been referred to a more enlightened neurologist, even though it was 1997.