The wisdoms are no longer!

So since my early twenties, my wisdom teeth had been nothing but trouble. Popping up a couple of times a year, causing pain then disappearing under the gum again. It really wasn't much of an issue at the time, i just assumed they would come through.

The last couple of years these episodes were becoming more and more frequent, and this year they really started to give me trouble.  I ended up having flare ups where they would cause an infection once every couple of months, which caused pain and swelling - and anti-biotics. I decided despite my dentist phobia, it was time for them to go, as the last thing i needed on top of ME pain was anything else.

After yet another trip to the dentist, i was referred to hospital to have them removed under a general anaesthetic. Although it was mainly the bottom two causing the pain, i was told after an Xray at the hospital that whilst the bottom two were indeed impacted, and there was no room for them to grow - the top two were erupted, but at an angle. 

So on the 8th October off to hospital i went. Although i have had far too many operations i can even begin to count, i was pretty nervous as have never even had a filling - my dental phobia arising from a scale and polish many years ago which has left me with sensitive teeth since.

When i woke up from the operation i wasn't in too much pain; my main concern was that it would wipe me out hugely which for us, is normal after having a general. However, i didn't feel too bad. I told the anaesthetist beforehand, and i quote, that i had 'Myalgic Encephalomyelitis', and she clearly knew what it was. Perhaps they done something differently? I don't know, maybe i was just lucky.

My face was quite swollen, but not as bad as i had imagined, and mainly on my right side where they had to drill into the bone, as the tooth was so impacted. I was up and about to the toilet pretty soon after coming round, and the nurses were very impressed (as was i) at this, so i was discharged around 4 hours after waking up. I had 'sore' pain everywhere apart from the lower right jawline, which was pretty painful, but bearable. No blood (I had a vision of waking up with a mouth full!)

When i had my pre-op, i was told by the nurse because of my history (Whatever that meant, ME, MRSA or recurrent infections in general) i would almost definitely be given anti-biotics. However upon being discharged i was not prescribed any. I discussed this with the nurse, and she agreed it was strange - she then suggested i speak to one of the surgical team, as the last thing she wanted was for me to develop an infection and have to return for anti-biotics.

 Happy to wait, an hour later i saw the dental doctor. He advised that it was protocol not to prescribe anti-biotics after wisdom teeth removal. This alone surprised me, as it is quite an invasive procedure, but having such a susceptibility to infections i was adamant that i felt i needed them. However he felt they 'didn't necessarily reduce the risk of infection'. 

The next day, with the pain medication given during the operation beginning to wear off, i was starting to feel the pain. By the Saturday, which was two days later - i was in agony, and on maximum dose prescription pain medication. The worst pain i have ever felt was a gallbladder attack which was a full 10/10, this was around an 8 - and i as many of you also do, have a high pain tolerance being in near permanent pain of some sort.

Sunday (3 days later) it was even worse, and i called NHS 111. After a roundabout of calls i was told by a GP i could maximise the ibuprofen which i was taking alongside the prescription pain relief, but that there were no dentists available and i would have to see my dentist next day.

Monday - absolute AGONY!! 11/10, something wasn't right - i just knew it. Had an emergency dental appointment who advised i could have a painful complication called dry socket, but as my mouth was so swollen inside he couldn't see. I had been spitting out clots of blood, which suggested dry socket. I was prescribed anti-biotics, and have just finished them yesterday. My stitches have finally dissolved, and the past two days i have been able to eat normal foods. 

It is not an experience i want to go through again, but i am glad it's now all over. I am happy i was prepared in advance (a list of items below!) I was rather annoyed about the infection, as it could have been prevented if i was given anti-biotics initially, so if you are to have this procedure done, please do air any concerns to the surgeon about this.

Its different for everyone, but my experience was this 
DAY 1 -OPERATION - Mild pain, moderate swelling, could barely open mouth. Water only.
DAY 2 - Pain increasing, mild/moderate, swelling increasing. Complan for food.
DAY 3 - Pain increasing, tolerance decreasing rapidly!! Complan for food.
DAY 4 - Severe pain, medication not touching it. Complan for food.
DAY 5 - AGONY, made me cry.... only a muscle spasm and a gallbladder attack has done that before! Anti-biotics given.
DAY 6 - Pain slightly reducing. Could manage mashed potato, if i turned (small) spoon upside down. Pain with every spoonful.
DAY 7 - Pain reducing, swelling still pretty much the same. Mashed potato!
DAYS 8 TO 12 - Anti-biotics done the job! The pain and swelling have been improving each day, today the rest of my stitches came out and i can eat solids. Still a little pain in right lower tooth, but nothing in comparison. PHEW!! 

Wisdom teeth removal saviour list, all of these things helped tremendously!

• Ice pack (15 mins on/15 mins off) for swelling
• Arnica cream for swelling
• Arnica capsules for swelling and shock to the body
• Anbesol liquid local anaesthetic for pain
• Dentogen gel (clove oil) for pain
• Lidocaine cream for outer tenderness of cheeks where they were swollen
• Painkillers taken regularly (Didn't always work though!!)
• 3 pillows to keep head elevated in bed
• Salt rinse twice a day after op, then after every meal for 10 days
• Complan nutritional drinks 
• Corsodyl mouthwash twice a day, at first DO NOT swish, just tilt head to the side. Do not use for more than 10 days
• Finally, distraction, TLC and lots of bed rest!!

So thats it really, the worst is over with. If any of you are going to have this procedure done, don't hesitate to ask me any questions you may have. :-) 

New books!!!

So i have been a very busy girl and published two further books since publishing 101 Tips For Coping With ME.

The first is 'Tickle ME - Stories of a brain fogged girl' - a collection of humorous stories from my best ever brain fog moments, a great pick-me-up if you are struggling.

http://www.amazon.co.uk/Tickle-ME-Stories-Finding-devastating-ebook/dp/B00PEVYGMS/ref=sr_1_1?ie=UTF8&qid=1423587271&sr=8-1&keywords=tickle+me+stories+of+a+brain+fogged+girl

The second is called 'Understanding ME - A Guide for friends, family & carers.' A book written specifically with non sufferers in mind, to help them understand the nature of the illness in words we often find hard to come out with.

http://www.amazon.co.uk/Understanding-M-E-Friends-Family-Carers/dp/1507646313/ref=sr_1_1?ie=UTF8&qid=1423587347&sr=8-1&keywords=understanding+me+friends+family+carers

My Newly Published Book

101 Tips For Coping With M.E

So after having this horrid illness for some time i felt i had learnt an awful lot since being diagnosed. I believe i have been one of the lucky ones to have had the change to participate in the NHS ME/CFS Management Programme.

I know there are many of you who have not been so lucky. For a while i had been thinking how i would love to put all of my tips and strategies for coping with the illness into a book, and luckily last year my health permitted me to do that! So here we are, 101 Tips For Coping With M.E. I have condensed down every single thing that i feel has helped me, and would benefit others. In the book i cover a range of subjects including Diet, Pacing and Alternative Therapies.

With Royalties supporting Invest In ME, An Independent charity campaigning for bio-medical research into the illness, this book is designed to help sufferers take control of the condition as much as is possible. 

The book can be purchased via Amazon here:

http://www.amazon.co.uk/101-Tips-For-Coping-With/dp/1291575456/ref=sr_1_1?ie=UTF8&qid=1395324689&sr=8-1&keywords=101+tips+m.e

I will shortly be running a new competition so keep your eyes peeled!

Vitamins & Minerals

The Vitamins & Minerals I Use To Help Manage My Symptoms 

Although there is no official 'cure' for M.E, the illness can be managed and symptoms alleviated by trying different methods. For me i feel the basis of this, including diet and pacing, is getting a good amount of supplements inside us to give our bodies the best chance of recovery.

I have researched supplements comprehensively and i now take several daily, i really do feel they help me get through the day. For someone with a debilitating illness such as M.E, the smallest improvement can help so much. I have tried, tested and regularly take all of these supplements, so i hope you find the list and info useful!

• Multivitamins - Recommended even for healthy people, i feel this is the very least you should take if suffering with M.E. Most of us do not get all of the nutrition we need through our diet, so i always ensure i have a basic multivitamin to take.
• 
  
• Co-enzyme Q10 - A substance found naturally in the body, which helps convert food into energy, this is an especially important one in the case of this condition, as studies have shown that people suffering from it are deficient. This can help improve energy levels.
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• BetterYou B12 Oral Vitamin Spray - I use this every morning and do feel it helps, B12 is a important vitamin when fatigue is involved and this has lots of it, as well as green tea which is a great anti-oxidant. For more in depth info i have articles on both of these supplements.
• 
  
• D-Ribose Powder - This is present in every body, which helps in energy production, or ATP, if you are more scientifically minded. M.E is essentially a symptom of mitochondrial failure. Mitochondria supply energy in the form of ATP, but when Mitochondria fail, then cells do not have the supply of energy to function at full speed. When these fail, it slows the whole body down. D-Ribose increases energy production in the heart and muscles. Again studies have shown that M.E patients have abnormally low heart functioning. Taking this daily helps your body to convert energy better and i have definitely noticed a difference.
• 
  
• L-Carnitine - This is an amino acid which helps your body turn fat into energy. It has been proven to benefit M.E  patients and it is one that i take regularly.
• 
  
• Magnesium Flakes/Epsom Salts - This is something people have been using for years (Ask your nan!), magnesium is bursting with health benefits, and people with M.E have been shown to be very deficient, in fact even most healthy people are! Magnesium helps the body regulate hundreds of enzymes and they can help boost nutrient levels. I buy them by the kilo and always put them in my bath, As well as soothing aching muscles and helping headaches, they are great stress relief  so i definitely have these on hand when i crash. I find a hot bath with plenty of Magnesium in it really does take the edge of a crash!

As always consult your GP before taking any new supplements, but i do hope this information helps. As a fellow sufferer i can vouch for all of the above and honestly say i think they help, certainly in my case anyway!

Fatigue Management Programme At Wareham Clinic

Review Of My ME/CFS Management Programme at The Dorset ME Clinic, Wareham Hospital 

In February i attended a six session bi-weekly fatigue management programme at the Dorset ME Clinic organised by my GP. I understand that treatment for the condition varies depending on the region, but i would like to give a heads up to anyone who may be attending the programme in the future.

The sessions were led by two senior occupational therapists who both have a lot of experience with ME/CFS patients. 

During the first session we introduced ourselves and gave everyone some info on our background and history. It was all very informal and i felt at ease straight away. There was a group of around six of us, so it wasn't too daunting!! Below i will talk about the practices i learnt during the course.

Understanding what Myalgic Encephalomyelitis is

During this session we learnt that M.E is a neurological disease which involves the Pituitary gland, the immune system and the nervous system. 

When M.E is brought on by certain pre-disposing and Precipitating factors which i talk about below, these systems of the body become 'out of sync'. The messages to the brain do not work as well any more and the body does not know how to regulate itself.

 For example, when we sleep - the sleep is unrefreshing because the brain is not being sent the right messages and therefore sleep no longer performs as it should with us. Another good example is that body temperature is not regulated properly, hence why we get very hot and.or very cold in normal situations. It made a lot of sense when this was explained, and i now have a better understanding of the condition myself.

Pacing

One of the most important and essential practice for an M.E patient is pacing. When once we could easily work all day, go out for drinks with friends before coming home, have dinner and watch television before bed, this is something i suspect not many M.E patients can do any more. 

Personally my activity is around 30% of what is used to be before my worst episode of M.E last year. We all have a baseline, in that we have our 'normal' level of how we feel each day. Of course when we do too much we then experience the 'crash'. It is said that when any of your normal symptoms become worse then you have overdone it, and this is how you know that you have pushed yourself too far. 

The hardest thing for me was accepting that things were now different, and i would have to make lots of lifestyle changes - even now i get frustrated when i try to make the bed and can't because my arm muscles are too weak, or a 30 minute face to face conversation brings a 'crash' on - but i now know my limits, and since i have found these it does make daily life a lot easier.

The Sleep Pattern

In one of the sessions we learn about the sleep pattern. Every person has a sleep cycle of four stages, one being the deep sleep where you experience R.E.M (Rapid eye movement). This is the sleep that refreshes you the next day, and is what every person needs. 

Each sleep cycle is 8 hours long. Have you ever noticed before you were unwell that you can sleep for 10 hours one day and feel very tired, but then sleep for 8 hours the next day and feel fine? Well thats because once you go over that 8 hours you are entering a new sleep cycle, and upon waking after 10 hours sleep, you wake during light sleep then your body thinks that you have only slept for 2 hours! This is why sleep is not refreshing for M.E patients. Their body does not enter the 'deep sleep' phase, which explains why upon waking you feel just as exhausted and groggy, if not more, than the night before.

There are medications that can help you achieve the deep sleep stage, one being Amitryptyline which i am on. I found that it was great for a month, and i did feel slightly more refreshed in the mornings, however for me it trailed off and i will having a review soon to possibly increase the dose. However everyone is different, and if you havent been given anything to help sort your sleep pattern out then i would definitely speak to your GP about it.

Predisposing Factors

During the first session we learnt about predisposing factors and precipitating factors. These are the things which make the chance of having M.E more likely, and also triggers which can bring on the onset of the disease.

Several predisposing factors have been identified with M.E. The main ones seem to be stress. We all know that stress can affect us physically in lots of ways, and stress over a long period can certainly make you more vulnerable to the disease, along with traumatic events, such as a car accident, domestic abuse etc. This was definitely the case with me. 

Another factor seems to be frequent throat infections (Ie tonsillitis) and virues, if you are one of those people who seem to catch everything (as i was) then this does put you more at risk for developing the illness. Every time we get ill it puts a strain on our immune system, and there is only so much the body can take. Research has also suggested that genetics may be a factor, with a certain gene running in the family.

 There have been reports of several family members having the disease, in fact there was a girl in my group whose mother and cousin had it too. Whether or not this is because they have similar personality types (As i will explain later) or there is a faulty gene, remains unknown - but there is certainly evidence to suggest this may be the case.Put all of these factors together and it makes the illness very, very possible.

Balancing Rest & Activity

Before i started the course, i thought i was managing the rest part very well, with regular naps and relaxing reading a book. However we learnt that whilst for healthy people, a way to recharge may be watching TV, or reading a book, however with us even mental activity is exertion and exhausts us. We learnt that before we 'crash', we can help energise ourselves by using relaxation and breathing techniques which use very little energy and refresh the mind and body. I have definitely found this helpful and find if i do this BEFORE i crash, and take 10 minutes out it really can help, and i do feel more refreshed afterwards. I have also found pacing in general is helpful, taking regular time out to relax properly can avoid those big crashes.

The Theory Behind Recovery

Before i attended the course, all i had heard about M.E is that 'most people never recover', however although this may be true, as it is dependent upon many variables, i do believe that recovery is possible if you give yourself the best chance of recovery by understanding the condition and managing it well.

 The idea is that currently you may have big crashes, where you are up and down like a yo-yo! If you begin to pace yourself as above, you can reduce the intensity of those crashes a lot. Since i have been doing this my crashes are definitely not as intense as they were. It is said that over time, if you continue to do this - they will gradually become less severe and eventually you will achieve a baseline, in that you know where your level of activity you can manage lies and know what to do to avoid over exertion. 

 The idea of this is that if you stay on this level for a while,  the symptoms will start to lessen in intensity. then this is when you can start trying to gradually increase your activity levels. If you do find you crash, then you are not ready and need to do less. If you don't then, you know that you can continue to stay on this level and gradually build up using the same technique. We were told that it takes longer for some than it does for others, and of course there are no guarantees - but is has been proven to work.

Personality Types

The clinic i went to in Wareham, Dorset has been running for 12 years and during that time 40% of their patients have been back into full time work/education within 4 years, which is a fantastic figure. We were told that between all of the patients they have dealt with, there does seem to be a certain personality type who are more susceptible to the illness. In my group alone, i noticed that we had all come from pretty stressful jobs - i previously worked as a senior sales advisor, and my group included a former police sergeant and social worker. We all seemed to be very determined, people - what some may call 'high flyers', which would explain the 80's nickname for the illness - 'Yuppie flu'. Whereas the illness is not simply 'burnout', but instead a neurological disease, it does seem to affect people of a similar type of personality. You may be someone who always puts other first, who is a perfectionist who is very harsh on yourself - or you may take everyones issues on yourself. A high number of M.E patients seem to have this personality, 'over'achievers'. Which makes it even harder to deal with when you were previously a very active, successful person. 

I am generally very impressed with the treatment i received at the clinic. Meeting others made me feel more secure in knowing that there are people in the same boat, and the occupational therapist understood the illness brilliantly. Although i know there is a long road ahead, i have learnt a lot about myself and the illness during the programme and it has given me valuable insights which not only will help me along the way to recovery, but ones that i can take away with me one day, if i am in remission. 

I hope this info has been useful, i would certainly recommend the Dorset programme to others and wish you the best of luck.

A New Discovery

BetterYou Vitamin B12 Boost

I was reading a magazine recently and this product caught my eye! It's a Vitamin B12 supplement in the form of  a spray, which provides a high dosage of Vitamin B12, Chromium and Green Tea Extract when sprayed under the tongue.

Vitamin B12 plays a key role in the normal functioning of the brain and nervous system, as well as energy. Even health people need Vitamin B12 t function properly, but if you have a neurological illness such as M.E, with one of the significant symptoms being overwhelming fatigue, it is even more important.

The information on the website reads:-

B12 has been proven to help reduce tiredness and fatigue as well as aiding concentration and memory. Boost B12 Oral Spray delivers 1200ug of this vital vitamin along with 40ug of chromium and 16mg of green tea extract with every dose (4 sprays).

The combination is delivered orally under the tongue, quickly entering the bloodstream for the ultimate in bio-availability and convenience. Delivering 1,200mcg of vitamin B12 per dose the bottle lasts an impressive 40 days. Ideal for those with an active lifestyle, if you're feeling increasingly tired or for those who travel. 

Having recently relapsed, I have been looking further for supplements which might make my day just that little bit more bearable. So I purchased one of these, I have now been using it for a few days and I do feel it has had an effect. Four sprays under the tongue in the morning, and this gives you 48,000% Recommended Daily Allowance of B12, 100% Chromium and 0.5mg of Green Tea. I have already spoken  about Green tea in another post, and how much it has helped me since I have been drinking it on a regular basis. 

Chromium plays a part in the release of energy, supporting carbohydrate, fat and protein metabolism, and helps maintain healthy blood sugar levels.

 With hypoglycaemia being suspected in many M.E patients, this appears to be a sensible supplement to take.

I feel this spray would be a great supplement for not only M.E-ers, but I healthy people too who perhaps are feeling a bit burnt out due to lifestyle factors. It has a sweet apricot taste, which is nice as I was expecting it to be bitter, but it tastes fine. I am very happy with it so far, although it is not a miracle cure for fatigue, and by no means is the fatigue less debilitating, but I feel it takes the edge of it slightly. When you have persistent fatigue day-in, day-out, the smallest relief is like a godsend! I would definitely recommend this spray, it can be found online as well as in Holland & Barrett.

BetterYou, who make the spray, have a range of supplements including these sprays with other vitamins - and I will definitely be trying some more!

Green Tea & ME/CFS

Since becoming unwell i have been on the constant look out for anything which may benefit me health wise, including supplements and vitamins. 

My sister is a health freak, and always going on about how beneficial green tea is, whether you are a healthy person or not. I had tried it before but unfortunately it made me very nauseous, but perhaps that was drinking it on an empty stomach! 

It isn't the nicest tasting tea, but since i have become unwell i have gone from a coffee freak.. to a green tea freak! If you suffer from the condition yourself you may well know that although caffeine helps perk you up, the 'comedown' off it leaves a lot to be desired! I find i feel great when i have a cup of coffee, but now when it wears off, it makes my crashes a lot more difficult to handle.

                                     
Green tea contains natural antioxidants and there is compelling evidence that it may help reduce the risk of heart disease, cancers and Alzheimers. It is loaded with polyphenols and flavanoids, which studies suggest seek out cell damaging free radicals and destroy them.

So where does this help with ME patients? Green tea helps indigestion (IBS is very common in patients suffering from the condition), boosts the immune system, helps brain function and prevents fatigue - all of which are relevant to the diagnosis.

Since drinking it, it has had a noticeable effect on my levels of energy throughout the day. It also seems to suppress my hunger which is great when i am trying to lose weight. As with most ME patients, exercise is a no-go, so anything that helps here is a must in my book! I drink mine with a little milk, and i find this stops the nausea, this may just be something that i experience, as i used to get this before becoming ill. 

I have now discovered a new product called Tetley Blend of Both, and it is PERFECT! It is a blend of green, and standard black tea - it tastes and looks just like normal tea, and you add milk to it as normal, but it has all of the benefits of green tea! I am now addicted to the stuff, and can honestly not tell the difference. I would definitely recommend trying green tea in some form, and i hope it benefits you as it does me!

How Do You Explain What M.E Feels Like?

Explaining M.E to the people in our lives can be difficult. Here are some quotes from sufferers who know exactly how it is!

      It's foggy and muddy in here

I have FM/CFS for 11 years.It feels like walking in mud,dragging a ball and chain in the fog.its so hard to work up to anything.It's hard to talk and exhausting to have to repeat anything.God how hard that is!Just let me sleep-night is the enemy.Nobody gets it.I look fine-why do i make everything seem so difficult??cause it is(for me).Just look at me and understand.Stop asking how i am.it doesnt change and it makes me feel as weak and embarrased to say i feel like crap yet again.Your worst day is my best day.don't you get it?AAAAHHHHH

Out With the Bathwater!

It first hit me in 1992 after a very stressful house relocation,and I thought it was just exhaustion.After a week,blood tests showed Epstein Barr and I had 3 months in bed sleeping most of the time.Family couldn't understand and my daughter,aged 21,thought I had somethig contagious,and wouldn't come into the room.Very hurtful! I felt like someone had pulled out the plug while I was standing in the bath and my energy had gone with it. I have had one major relapse,2002,after a flu,but when I feel cold sores developing,and generally feeling run down,I know to start taking a tonic high in Echinacea and vit C.That helps,but it usually means a few days in bed.Like others,I hesitate to pre-book outings as I have had to cancel so many times over the years. Be kind to yourselves,and laugh a lot,it helps.

How I feel about ME

When I smile I feel a hole, a heaviness inside, a place where I am empty, a feeling I cannot hide, I try to smother this sadness, with friendliness and smiles, I fill my heart with gladness, yet secretly all the while, you coil tightly around my heart, I feel your weighty chains, you try to tear me apart, but I will not play your game, so I carry on with smiles, and laughter too and hope, that one day you will loosen, and let me free to cope.

Every chore is like doing a marathon

I've had CFS/ME since 2003 and usually explain the symptoms to friends and family as a "never-ending flu". However, after doing stress exercise testing at the Pacific Fatigue Lab in Stockton California I have discovered a new way to explain it. The testing shows that Post-exertional malaise is so bad that the day after the maximum exercise test day #1 it looks like I had run a marathon, not exercised for 15 minutes. It shows that I don't even produce enough energy per day that is required (on average) to take a shower. That seems to be a good way for others to relate the CFS symptoms to their own lives.

Flu bug

At the beginning, the first couple of years was just like that, like having a really really bad flu, and just so weak, dizzy, achy, my brain hurt, eyes always wanted to shut. Now that just happens sometimes, although excitement over things that ask for energy are still low. 

Exactly or Ditto

Adrienne - It feels as if you have ESP and have read my thoughts. Everything you have said I have felt. Sometimes even the little things seem so hard to do. One problem I also have is that when I am feeling good (which isn't often enough) I over do things and then I feel like I have been run over by a steam roller. Sometimes it even seems hard to take a deep breath. I had Glandular Fever about 15 years ago and life hasn't been the same since. I would love to hear from anyone who has a similar story. I am so sick and tired of myself being sick and tired. I'm at my wit's end. If I was told I had a fatal disease and had only 6 months to live, it would be a blessing. Everyone take care, Mary-Anne

Like being under anesthesia

My life has not been the same for the last 12 years since I was diagnosed with fibromyalgia and Chronic Fatigue. I feel like someone has injected me with anesthesia and I am about to have surgery. You know when they say count from 10,9 8 etc.... and you feel like you are falling into a deep sleep. That is how I feel all of the time. What a horrible way to live. I hope and pray that someone finds help .

Explaining CFS

I am a veteran when it comes to having CFS acquiring this in 1984 at age 44. I am in the majority as Dr. Paul Cheney once explained to our support group. We get sick and then we keep acquiring all these wierd symptoms. To describe it would be to say it was like a combo of sleep deprivation, flu, hangover, and jetlag all rolled into one. Then, as we age (I am soon to be 70), we acquire new issues and its difficult to separate CFS from aging. To describe in more detail would take more space than what is allotted here.

F.A.Q's By Non Sufferers

It is very difficult to understand any illness unless you have experienced it yourself, that is why i have researched and compiled a list of 'F.A.Qs' often asked by non sufferers. Hope it is helpful!

  What kind of symptoms do people with ME/CFS have, aren’t they just tired? 

Cognitive dysfunction, including impaired memory or concentration , post-exertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercis, unrefreshing sleep, joint pain (without redness or swelling), persistent muscle pain , headaches of a new type or severity, tender cervical or axillary lymph nodes, sore throat (and many more) Telling  a person you are tired too is the ultimate insult to someone with ME/CFS.

Do people ME/CFS recover?  

The disease can be managed, but no cure exists.  People with ME/CFS often live in isolation in part because their activity levels do not allow them to leave the house, work, or even get out of bed depending on the severity of their condition. However, isolation also serves as a way to avoid viruses due to an already compromised immune system. 

But I’ve seen people with ME/CFS and they look okay? How can that be possible?

 People with ME/CFS endeavour to take part in what activities they can. Unlike people who suffer from depression, they have not lost any interest in hobbies, activities or life. In fact, not being able to participate in these things causes patients with ME/CFS an enormous amount of grief. What you see is a person with ME/CFS having a good day. What you will not see is the price they will pay later for that “good day”.  People with ME/CFS can become sicker if they do too much. This costs them jobs, friends, and support.

You just said that the only drug for ME/CFS was also for AIDS and Cancer, how can that be possible?  

 ME/CFS is not chronic fatigue. Chronic Fatigue is feeling tired, as a symptom. ME/CFS is a serious neuroimmune disease without a known cause. ME/CFS patients have been compared to Cancer and AIDS patients in their last two months of life.

Can I catch ME/CFS? 

You will not catch ME/CFS from someone by talking to them. However, it has been transmitted by blood transfusion, and there have been outbreaks of it in communities in the past. At this point in time, there have been 5 genes associated with ME/CFS, and most people who have it caught it after having any virus such as chicken pox, mononucleosis, the flu, strep throat et cetera. ME/CFS patients are asked not to donate their organs or blood because of potential undiscovered agents in their blood.

But what if I have a friend with the disease, what can I do for them?  

Ask them how they are. Ask them how they are coping. Ask how you can support them. Many patients are living isolated lives. It is painful for them to see so many people do what they cannot do. Many patients cannot use the phone or listen to music because noise and light drains them of energy. They cannot make appointments because they do not know if they will be awake, or strong enough to go. So understand when they cannot see you

Do people die from ME/CFS?  

Yes, the most famous case is Sophia Mirza who died at age 32.  She was sectioned in the UK because she would not get better, and her subsequent “psychiatric treatment” led to her death. When her body was autopsied, nothing was found, but in an independent medical examination inflammation was found in spinal root ganglia. It was reported around the world that she died of M.E. However, her death certificate read “CFS” because the pathologists who agreed what the disease was argued about the name and CFS was the “modern term”.  People with ME/CFS have a lower life expectancy than the normal population and are more likely to die from cancer, heart disease, organ failure and suicide (due to lack of support).

Advice For Friends, Family and Carers Of An Individual Suffering From M.E/Chronic Fatigue Syndrome

If you are a parent, carer, friend or relative of an M.E sufferer, it can be very tough, especially if you do not know a lot about the disease. This guide i have put together will help you understand the basics, from typical symptoms to advice on how to help the individual as much as possible.

What is CFS/ME?

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue)and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities.

People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday livesand their families. The illness may last a long time.
 

People with ‘mild’ CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

Symptoms of CFS/ME

 The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.
Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:
• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats),
• exercising or concentrating on something makes your symptoms worse.


How Can I Help Someone With M.E?

Emotions are harder to control with ME/CFS. People may cry more easily or alternatively they can find laughing exhausting causing brain fog. Heightened emotions may be a sign that a person has exceeded their activity limit.

Household tasks and roles may need to be redistributed. Financial adjustments can be overwhelming. Only a few people with ME/CFS are able to continue working full-time. A parent of a young person with ME/CFS will need to change work arrangements to be at home. 

Having less energy means reducing time with others and for most will mean a reduction of 50% or more. Face-to-face contact may need to change to email or telephone. Social outings will need to reduce. Large gatherings may be exhausting. Sensitivity to light, noise and chemicals will lead to further restrictions. 

Any stress such as dental work, infections, financial pressures or relationship issues can cause a heightened response.