And such is the language used by Criona Wilson, mother and caregiver of the now deceased Sophia Mirza, the first recorded case of someone dying from ME (CFS/ME) in the UK.

(6 minute 30 second audio)


At age 32… Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK. Read the story where Criona Wilson talks to a reporter about Sophia’s excruciating final years and the torment they suffered at the hands of a health profession that didn’t know how to treat her illness.

As a former midwife and qualified nurse, Criona Wilson says that if there’s one thing she knows about, it’s illness. ‘There’s a rhythm to sickness, to getting better,’ she says. When her youngest daughter mysteriously became unwell, she had a feel for the diagnosis. ‘Although I’d never nursed anyone with the condition before, looking at Sophia I said, “I think you have ME.”’

Eight years later, in 2006, the inquest of Sophia Mirza dramatically supported her mother’s instinct. The coroner ruled that the 32-year-old had died of complications due to myalgic encephalomyelitis, a landmark verdict in the UK. A neuropathologist told the court that Sophia’s spinal cord was inflamed, with three quarters of her sensory cells displaying significant abnormalities. Yet, as Sophia’s treatment by the medical establishment had underlined – she was forcibly sectioned (committed) for a spell in 2003 – many doctors handle ME (also known as postviral or chronic fatigue syndrome), as if it were a mental condition.

I can relate to that remark. Can’t you? All people who are severely ill want to be listened to, want someone to take them seriously. And… they want to get well and leave the illness behind them.

Criona describes her daughter as (the) walking wounded at that stage: able to potter (putter?) between bedroom and bathroom, able to lie on the living-room sofa. With support from her GP, Sophia applied for disability benefit and was given a council flat in a high-rise block nearby. It was glaringly bright and noisy. Ten weeks after moving in, Sophia was bedridden and Criona moved in to care for her. ‘I had never known anyone with such hypersensitivity to everything. She went through all the stages people do – hoping to get better, helplessness, anger.’

She recalls the first signs of the drawn-out illness that changed everything in 1998… .

Sophia caught malaria while traveling in Africa; then, while living in London, ‘she got flu and I went to see her. She suggested we went to a café down the road and she was walking like a 120-year-old woman. But she got better. It was flu at that stage. The following year she got it again. I went to collect her and halfway back she said she couldn’t continue, the car was making her desperately ill. We were stuck in a lay-by for a couple of hours, and then I got her home to Brighton and she lay on the couch and that was that: she never did anything again.’

Read more about this fascinating mother and her deceased daughter, Sophia Wilson, the first case of someone dying from ME at the DailyMail.

Today I read this account of Criona Wilson and Sophia Myrza and know that a part of me was there. I suffered badly, too, for a long time with Chronic Fatigue Syndrome (and Fibromyalgia). But I also know that I did not go through what Sophia endured. Sick and hurting beyond human tolerance, she was virtually abandoned and left to die by the UK health system. Her mother was her only supporter and caregiver.

I encourage you, as a friend, caregiver, doctor or health official, if you can reach out to a CFS/ME sufferer and tell him or her that you’re there to support them, it will make a world of difference. If you can reach out to help, do it. If you can make a difference and improve the health system, do it. Let’s stick together, speak out and demand better health care through 1) recognition of the illnesses, 2) more compassionate care, 3) better answers for getting over the illness and 4) for the ways and means for people to be able to resume healthy lives. The time has come to act.

I truly think that the health services of the UK should really be ashamed of themselves. Putting such exclusive emphasis on the “mental” components of the CFS/ME only serves to pidgeon-hole it and allow “you” to shirk your responsibility of providing care, through the very real medical side of this complicated and tragic illness, for the people who suffer with it. Where is your common decency to the walking wounded? If this illness afflicted you or someone you love, you’d be singing a different song entirely.

Thanks for listening. Please leave your comments below, Cinda Crawford
Host of the Health Matters Show and creator of Sacred Cellular Healing

Writing this work surely had to be a miraculous accomplishment for Emily Collingridge because she was so drastically ill for so long. She fell sick when she was 6 years old and that was 22 years ago!

(Learn more about Emily and her new book…

here, at the Association of Young People with ME.

Emily Collingridge, from London, learned the hard way. She became ill 22 years ago, at the age
of 6. She has now had severe ME/CFS for 12 years. At her worst she was blind, mute, doubly incontinent, tube fed and unable to move at all. Rare complications brought her close to death. Desperate to make severe ME/CFS a less traumatic experience for others, Emily has spent the last two years researching and writing Severe ME/CFS: A Guide to Living.

By all accounts, Emily Collingridge is an extraordinary young woman. I encourage you to order the book directly from the website. Here are comments I received via email as to them being able to ship the book overseas.

The guide has been written for UK patients, however it does include valuable information for all patients. We will however have to include postage (airmail) which will be added to the cost (£5.99) for the booklet for all overseas orders.

They provide an order form that you can print out, if you like.

You decide about the value of this book in your efforts to understand CFSME. I suspect it offers quite a bit of new information about the illness. Plus, it could be the perfect gift for the caregiver in your life. There never seem be enough good words of praise and gratitude to offer a true caregiver.

To all those suffering with CFSME or MECFS (whatever term you choose),
To your health, help, information, happiness and comfort,
I’m Cinda Crawford, your host of the Health Matters Show

Case in point, take this week’s subjects: a) being sick all over with Fibromyalgia and Chronic Fatigue Syndrome, b) how and why the body gets so confused about how to heal and c) the holistic healing and health answers for improving your health.

This week my husband hurt his back badly. We’ve been to the emergency room twice in four days. He’s on high-powered drugs… and he can’t drive safely. So I’m not only playing nursemaid, but chauffeur. My time and energy have not been my own. Thank goodness I’m well enough now to do that. Way back when I was so sick, that would not have been the case.

This video is 11 minutes and 46 seconds. Feel free to download it. Continue on for more great information!

I started the Health Matters Show in the spring of 2008. For some time I had been training to learn the technology with high hopes of putting all of the knowledge and contacts I had created for 15+ years to good use. I really wanted to make a difference in the Fibromyalgia and Chronic Fatigue Syndrome communities.

But since I’d been working so hard, day and night, for months on end and considering I was under an emotional strain from a particular family situation, I had not been paying really close attention to my own health. Working on clients? Yes. Working on family? Yes. Seeing to everyone else’s needs? Yes. Putting the show and the websites together? Yes. Even planning a two-week trip out west for more training? Yes.

Well, the day before I was to leave for the trip, I started getting sick. Within a day on the proverbial road, I was much worse. Thank goodness I took along my Young Living essential oils, Thieves, Oregano and Lemon. It would have been nice to have had some others to help me, too, but at least I had those. The airlines overlooked the bottles in checking me out, but oh how mighty and important they were to me!

I probably smelled like an aromatic pharmacy in the meetings, airplanes and restaurants. I could have cared less. The point is that my body survived what probably would have otherwise been a severe case of broncitis or walking pneumonia. I had not been that sick since 2003, right before I healed from Fibromyalgia and Chronic Fatigue Syndrome. I used my oils religiously, slept as much as I could, drank a lot of pure, clean water and practiced as many holistic healing regimens on myself as I had time for. The point is, I survived.

Now, even with what I’m doing for my husband, I’m still surviving and flourishing, too. Playing nursemaid when necessary, driving as needed. My husband and I make a good team because we each try to help the other one out when it’s needed. Right now he’s putting a roast in the crock pot with potatoes and carrots.

So, I ask you, dear one, are you prepared for both the good days and the bad ones to come, even the ones when you’re sick all over? Are you using tools like Young Living Essential Oils and their other products to bolster and support your Immune System? Do you have an understanding with your spouse and family members how important it is to pitch in and help each other out when needed?

If you answer, “No,” to any of these, you have some work to do. Now, I’ve got to run and take a quick peek at that roast. You have a good one and a very happy weekend,

Cinda Crawford, host of the Health Matters Show

You may recall that Hillary Johnson authored the powerful book, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

If you don’t have this amazing chronicle, pick up a copy of it inside my Amazon store that is located on my website. (Look under the appropriate tab above or find Cinda Recommends on the right hand side.)

I have my own copy of this book and I refer to it quite often, even though it’s now 13 years old. My how much things stay the same sometime! The book is still timely, plus the author seems to keep a keen interest in everything “chronic fatigue” that’s going on in the world. That’s really good. We need more people like Hillary Johnson taking the powers-to-be to task and keeping them honest!

If you haven’t studied much about the new retrovirus XMRV, now’s your time to get started. Put the term “XMRV” into the search engine box on this website. Locate the box in the middle column.

Dear one, I know it’s hard to keep up with everything going on, particularly if you’re feeling lousy, but keep up as best you can. If you really cannot do it, ask a friend, family member or caregiver to help you with this important task. You need to stay abreast of what is happening in the world. Your present and your future depend on you keeping your knowledge, your mind and your intentions for healing current, informed and positive. Plus, remember that we all need and cherish the help we get from our personal caregiver. (((Hugs to all.)))

My best to you and yours,
Cinda Crawford, host of the Health Matters Show

Example: You’re not feeling well at all. You’ve been in bed most of the day. You’re bone tired and it seems like your whole body is aching. Some of your sore spots feel worse than others. A friend or maybe your spouse invites you to join him to go somewhere and do some activity. Your spirit really wants to get out and have fun, but you can’t contemplate how much energy you’ll have to muster in order to take a shower, get dressed and physically ready yourself to go out in public. You turn down the offer… to go… to interact with others like a regular, normal human being. Instead, you reply with some half-hearted excuse, roll over, pull up the bed covers around your neck and settle into your retreat once again. Very soon your mood worsens, your hope fades and you feel more tired than ever. And probably, you’re in more pain than you were before.

If that sounds like you, I’m not going to tell you to buck up and get on with life. I’m not gonna’ tell you to just be brave and suck it up. Half-hearted platitudes and sayings mean nothing if you can’t do it.

Conquering all aspects of Fibromyalgia symptoms, and fatigue in particular, is a task best faced with a clear head, a plan and some help. If your body is going to get well from this illness all on its own, it will do it eventually. However, if you don’t improve and get healthier, well then… frankly you need some help.

Now many people find relief in taking supplements and vitamins. In such a case, they probably are propping up the body until it gets a foothold again and begins to heal. That is a good first step in a comprehensive plan, but only if you can afford those products.

*I’ve had success with Acetyl-L-Carnitine with Alpha Lipoic Acid and NADH from the Pro-Health people. There are thousands of products you can try out. Just be careful with whatever you choose because you’re putting a substance into your body that might cause a reaction. If you have doubt, consult your physician.)

Other people find help from taking prescription drugs that help to boost their energy and mood level somewhat. And once they feel more productive, their bodies keep on going, sometimes achieving a decent level of health that they can live with. But there are 2 problems with this: 1) having to take the drugs possibly forever to feel this good, and 2) suffering with the drug side effects. *If you didn’t see the video from last week, give it a peek. It’s at the bottom of the blog post.

The third suggestion I can give you is good, too… maybe the best suggestion of all, but I’m a bit partial.

Now that I am healed and feel really good again, I work as a health consultant helping other people get well from Fibromyalgia, Chronic Fatigue Syndrome and other illnesses, too. If I can help you or answer any question about feeling better and how to get on with your life, email me and let me know you’d like a “free” 15 minute consult.

Thanks and have a wonderful day.
Cinda Crawford, host of the Health Matters Show

(Okay. Here’s my plan to tackle this big, week 3 topic as we look more and more closely at Fibromyalgia Symptoms. I’m blogging about Part 1 of fatigue today, Monday, Part 2 of fatigue on Tuesday, moving on to a more thorough look at human energy on Wednesday, and then on to brain fog on Thursday. Friday I’ll wrap up this with some very special thoughts and information for the Friday edition of the Health Matters Show podcast, which airs at 3pm EDT. Please know that it’s always available on the website or you can find it on I-Tunes.)

Whatever you do, be sure to get your hands on all of this information! Use it yourself, pass it on to friends and show it to your loved ones and especially the caregiver (s) in your life. This is definitely good “Caregiver Info” and I hope you use it as such. Remember: knowledge is power. This is a good way to start gaining your power over Fibromyalgia.

#2: Fatigue: Doctors report that their offices have more office visits for the medical complaint of “persistent fatigue” than any other reason. So, we have to wonder… why are so many people tired all the time? How does this condition gain so much prominence in our daily life?

Most of us don’t need a definition of the word fatigue because we know it means being really tired. Someone suffering from recurring or persistent fatigue can experience a real disruption in their lifestyle because such a level of fatigue makes daily living a difficult challenge.

People with Fibromyalgia have more of a problem with fatigue than otherwise healthy individuals. However, even if you’re only minimally sick with Fibro (and most people are worse than that), I propose that fatigue affects you more than you realize. Let’s see how.

Example: You get up in the morning feeling fair and decide to put a load of clothes in the washer -or- get the dog and fasten his leash, intending on taking him for a refreshing walk down the street. Mid-way through either exercise, you begin to feel very tired and you ache. Your breathing becomes more labored. You look around for the nearest bench or chair to rest and catch your breath. If, for some reason, you don’t find a suitable resting place or you doggedly push through your fatigue and keep on going, the dull pain you were trying to ignore rears its ugly head and screams at you…

When you begin to pay attention to these not-so-subtle fatigue messages that your body is sending you, a) you may be able to realize ahead of time that you’re on the verge of doing too much, overtaxing your body and pushing yourself into a downward pain spiral, or b) you’ve already done too much and you’re going to pay a steep price for it! Yes, you’ve gone past your limit. Dear one, when this happens to you, consider these types of experiences as important wake up calls. The truth is it’s time to pay attention if you really want to feel better.

Ask yourself questions like these:

• How do you feel about what you’re experiencing?
• Does it bring up certain emotions?
• Can you change the way you “operate” and do things differently from now on?
• Okay, then, what will you do differently when the same type of situation arises again?
• How can you be smarter overall about dealing with your fatigue?

Answering this type of introspective questions is a challenge, but taking the time to purposefully contemplate them and come up with good answers is very necessary if you’re going to learn important personal lessons about your dance with fatigue.

(And, in the act of doing so, any caregiver or any member of your support team can either help you or hinder your progress. Fibromyalgia and fatigue can be a dance of multiple partners, all having their own influence upon your life and how well you survive.)

Until tomorrow and Part 2 on fatigue,
I’m Cinda Crawford, host of the Health Matters Show

A. Consider lowering your anxiety and stress levels through practicing meditation, stretching, yoga, tai chi, and doing slow to moderate walking. Breathe deeply when you think about it and breathe slowly. Choose moments when you can escape and take a mental vacation. Learning how to breathe deeply and practicing it regularly are not difficult, time-consuming or extremely tiring activities. This only requires that you be mindful and purposeful.

Ah-h-h… . Feel the rush of cool air going into your lungs, nourishing and sustaining your life and health. Allow it to heal you.

These activities will help to calm overactivity of your HPA (hypothalamus, pituitary and adrenal axis), therefore helping to lower production of the biochemicals that your body produces when you’re stressed out (eg. when you’re in so much pain). Know in your brain and in your heart how important it is to support your body by doing what you can. No matter how much pain you’re in, your body is not your enemy… .

*Dear One, this is a really important concept, if you are going to quit beating yourself up about why you’re not getting well. Your body is sacred; it was built and designed by God; it is not your enemy.

Note: If you have read all the posts this week, you’re caught up when you finish this one and points B and C. If you’ve missed anything, listen to the audio or download it to your computer or cell phone for all the information. However, you’ll need to return to the blog to get access to all of the referenced websites. There are quite a few listed.

(This audio is 25 minutes 52 seconds)

B. Consider adjusting your diet. Caffeine, sugar and some foods exacerbate pain, inflammation and other symptoms. (Dr. Oz talked about lowering caffeine and sugar on his new television program Monday, but in terms of how to lower your stress levels. With Fibromyalgia, both pain and stress often go hand in hand. Lower your stress, lower your symptoms. Dr. Oz is not providing a link to that particular show, but I’m sure you can research his site and read plenty of helpful information about sugar and caffeine.)

Eating sugar also can cause yeast problems and “yeast” can really add to your symptom load. Staying away from sugar and purchasing acidophilus-type products or probiotics are worthy suggestions to consider. Some products are much better than others.

B. Look into all kinds of alternative (or non-traditional) therapies and protocols. I’ve mentioned several above and there are many more like massage and chiropractic care to help you with those pesky muscle spasms or generalized muscle pain. You can put the terms you’re curious about in the Search Box (located in the middle column of this website) and you’ll find more valuable posts.

*Plus, you’re welcomed to explore getting Sacred Cellular Healing work done with me. Sacred Cellular Healing is a complete healing tool. Most people find that it works quickly to help them get well from even tough cases of Fibromyalgia and Chronic Fatigue Syndrome. I can say cheerfully that pain is often one of the first symptoms to go!

C. Love yourself and your body. Don’t sit and stew in a pity party for long. Keep your emotions uplifted and positive. If you’re really down, call a cheerful friend or correspond with someone who is making progress at getting well -or- someone who’s already well! Consider taking an online self-help course or contacting someone for service that may help you get well. Dear One, know that I’m happy to talk with you, so feel free to email me.

I hope you’re benefiting from this series on Fibromyalgia symptoms and pain this week. (No, this is not a complete expose’ on this vast subject. I didn’t intend for it to be. Too many books have been written about the symptoms of Fibromyalgia for this to be complete. But it is a start, and pardon me for saying so, it’s a darned good place to start or to finish, if you’re looking for really useable answers.)

I invite you to visit the blog and the Health Matters Show podcast for the next two weeks to catch all of this information.

Be sure to leave a comment below. Let your friends and family (your caregiver team) know about this helpful information.

Thanks so much, Cinda Crawford
Host of the Health Matters Show

Here are some ways you can do that:

1. If you’re stuck at home and don’t feel well, do something spontaneous that makes you smile and laugh. Maybe that’s dancing to an old song, phoning your best friend or opening up the last two pieces of your favorite chocolate to share with your caregiver who helps you day in and day out.
2. If you’re in a crowd and you don’t know why you really came along with the group, imagine they all have green hair, orange tongues and they’re standing around in their underwear! (Tee hee…)
3. If you and your caregiver are struggling to have a good relationship or you simply want him or her to know how much you care, take time out to watch the video below together. It may open the door to having a meaningful conversation.

We know that life can be darned challenging if you suffer with a chronic illness like Fibromyalgia, Chronic Fatigue Syndrome, Arthritis, Lupus, Lyme Disease, cancer, heart disease, and on and on the list goes. That’s true for the patient and the caregiver.

And we all appreciate the people who help us get by, but it’s not always easy to express truly sentimental thoughts and tell others how we appreciate them for what they do for us.

Plan now to appreciate yourself and those around you. Valentine’s Day is a fun time of the year to express love to each other.

Audio of today’s show: (4 min 15 seconds- listen or right click to download and save)

Happy Valentine’s Day,
Cinda Crawford, host of the Health Matters Show

I drove him to the office yesterday and he worked for 3 hours at his desk while I worked on my laptop computer. He came home and napped for hours. Today he ventures back to work on his own for a bit. I truly hope he does as well.

I, on the other hand, probably need a vacation. Nursemaid duties plus regular chores are keeping me busy and I’m tired. There is so much to do… I doubt if I get my downtime.

Now don’t get me wrong. I am very grateful that he is healing nicely and that I’ve been able to help out. This, however, causes me to think back to those weeks, months and years when I was so sick with Fibromyalgia and Chronic Fatigue Syndrome. (Note: It was not until the end of that time that I discovered something that helped me get better quickly, but I certainly didn’t have anything like that at first. I floundered a long, long time and my family suffered right along with me.) My husband and son get credit for really hanging in’.

So today, I say to all, you never know what you can do until you have to do it.

And specifically to you caregivers, my hat’s off to you. Take your breaks and take a vacation for me if you can! You deserve it and you may need it to hang in for the long haul.

Thinking of you, caring for you and wishing you a great day,
Cinda Crawford, host of the Health Matters Show

Certainly there is a lot we can say about the people who give patients care, but putting out good info to help them survive and thrive is probably the best way to really help them accomplish what they want to do… support their loved one and help them get well!

We love you, caregivers. Every single one of us with Fibromyalgia or Chronic Fatigue Syndrome honor and cherish you.

Thanks for all that you do!

Cinda Crawford, host of the Health Matters Show

But you can draw on many past lessons and skills to aid you. Here are a few:

1) What you learned in Sunday School.

Many of us have had some background in church or in some type of religious organization. In most of those we studied what is termed in common everyday language as, “The Golden Rule: do unto others as you would have them do unto you.” Even if you’ve never had experience as a caregiver, you can make an educated guess as to how your loved one would like to be treated.

2) What you learned at work.

Many of us have spent some time working at a job. You probably learned that you have to treat people civily and with a bit of respect to get along. The same goes for your sick one now. They only want to be treated with dignity and concern for their welfare. Plus, if you’re really getting into this, consider that they want to be valued and want to feel worthy.

A person with Fibromyalgia (FMS) or Chronic Fatigue Syndrome (CFS) at times may not be able to do much, but he or she is still a person who really needs you! If you don’t say or do anything to “de-value” your loved one, they will survive with a more intact, healthy sense of self-worth, which supports them in the process of getting well.

3) What you learned from being with your buddies or girlfriends, whichever the case may be.

You laugh, poke fun, giggle and tell jokes with your best friends. Do the same with your sick loved one when the timing is right. It will help them feel normal to be able to understand and laugh at a joke. Humor is infectious in a good way!

I promised you my thoughts and a tally on my role as recent caregiver and these things came to mind. My husband is still not on his feet, but there are times when we can do things together and he feels “worthy.” When he feels down and tired, we both rest together. And I’ve needed that down-time, too.

Yes, I’m needing some extra rest. I wish you peace, happiness and rest today.

Cinda Crawford, host of the Health Matters Show

Much of the time I was too sick to do even menial chores. We got by because he was willing to work overtime at work and overtime at home pitching in. I will stay eternally grateful to him for his patience, persistence, sacrifice and love.

Now that I’m much, much improved, he still helps out a bit because I stay busy working on the Health Matters Show and finishing a new book. Plus, I think he never wants to see me that sick again. However, in the last few years, his career has demanded more of his time and attention, therefore he has less and less of it to give….

The other day in a post, I mentioned that Gordon underwent major surgery to have his left kidney removed due to a mass, which turned out to be renal cell carcinoma. The doctor believes he removed all of the cnacer and my husband should have no further trouble. After five tough days in the hospital, Gordon finally is back home. It was during the time that I scurried around with different kinds of errands that I realized how upside down our life will be for awhile. Our roles are reversed; I’m now his caregiver.

So as we go through this experience over the next few weeks and months, I will post what it’s like to be a caregiver with such mundane info as the activity required of a caregiver to the mix of emotions that suddenly flood and overtake a room (when caregiver and sick person collide). If you’ve been through this type of experience, you know what I mean.

Right now, while you’re thinking of it, hit the comment button and send me your thoughts– no matter whether you’re “receiving” the care or “giving” it. If you input your experiences and share with others, you’ll get a lot out of this and learn so much faster because there will be input from others. Plus, what you say might help other people going through the same or similar situations. (Feel free to leave your first name only. What you post in the comment section will be copied to the blog.)

Either send me your thoughts and questions here by “commenting” or go to one of the audio input boxes on the front page of the blog, dial in and speak your thoughts or questions.

It’s really easy and your opinions and thoughts count for so much! I really want to hear from you and get your take on this subject. It’s one most of us have to deal with sooner or later in life– the role of the caregiver.

You, I, everyone wants to learn how to survive this ordeal and come out on the other side being healthy and having a healthy support system.

Thanks, Cinda Crawford, host of the Health Matters Show