National Centre for Neuroimmunology and Emerging Diseases, Griffith University, Qld

The National Centre for Neuroimmunology and Emerging Diseases (NCNED) is a new research centre and clinic based at Griffith University, in south east Queenland, Australia. You can read more about NCNED on their website.

I have made an appointment at the clinic but they only see patients on Fridays so my appointment is still a couple of months away (even though I booked it as soon as they opened in September), so there is obviously a big demand.

They also conduct research and I have filled out a questionnaire (which you can do online anywhere in the world) and donated blood. You can arrange to donate blood in some capital cities in Australia (Brisbane, Sydney, Canberra, Melbourne and Adelaide I believe) and they do home visits for severely affected ME patients in south-east Queensland. They were also looking for blood donations for a healthy control group and one of my friends and my mum have donated blood, so that is another way friends and family can help.

The research team also helpfully email you a copy of the blood test results. Unfortunately the ‘normal range’ they listed for electrolytes was wrong and said my results were 100 times over the normal limit, which worried me and I rushed off to the GP to get it checked and he explained where they’d gone wrong. This knocked my confidence in the researchers at Griffith University a little, plus my GP expressed surprise that they seemed to have looked at a fairly narrow range of results, which had already been covered by my GP.

I did wonder about whether I keep my appointment at the clinic in Queensland, especially as it will take a flight of a few hours plus a drive of a few more to get there.

CliniHelp App

Griffith University also developed the CliniHelp App, which I looked at against some other symptom tracking apps. I haven’t gone back to using it but it shows some thought on the part of NCNED to develop it. 

 

Have you participated in one of these studies or any other medical research for ME or for CFS? Have you made an appointment at the clinic or already had one?

Finding a new doctor, or sticking with your current doctor?

Does your doctor understand myalgic encephalomyelitis, or post-viral chronic fatigue syndrome? Have they helped you address the symptoms with treatments? Referred you to specialists to investigate abnormalities? Taken you seriously and helped you manage, or even improve?

These are the questions I’ve been asking myself since my last unsatisfactory visit to the doctor (general practitioner or GP). I left upset because I wanted help to understand why I haven’t been continuing to improve, but all I was hearing from him was “TAKE THE ANTI-DEPRESSANTS”. I told the doctor I’m not depressed, just upset and sick and tired of being ill for years. The last few times I went to the doctor I left feeling worse.

At this stage I feel compelled to say that mental health is important in management of any disease, particularly a chronic one. I have had help from psychologists, teaching me how to deal with pain and how to cope. The psychologist also found that I’m not clinically depressed.

Having anti-depressants foisted upon me made me feel like the doctor wasn’t taking my physical symptoms seriously.

So I asked around (well, in the way we ask now, online) and came up with very little. Either their patient lists were full, or I didn’t get a good vibe about them. I was looking for a straightforward GP who was perhaps open to alternative treatments (rather than someone who wants to sell me things).

Starting over with a doctor takes effort, explaining yourself and your history, having faith in them, energy, money…is it worth the effort?

My local doctor has all my medical records, is nearby and has helped me with treatments. But I’ve often taken my partner to appointments because I feel like the doctor takes me more seriously and the doctor listens more closely when my partner describes how my health has been and what he’s seen at home with me.

There isn’t a great deal that a GP can do to treat myalgic encephalomylelitis. In fact any time you get diagnosed with chronic fatigue syndrome it is almost like a licence to stop looking for anything. But I do need pain medication, thyroid checking, medical certificates for work (well, I used to) and other paperwork and occasionally I get illnesses like other people get that I need to see a GP about.

So in the course of writing this blog post, I’ve decided to stay with my local doctors’ office for the moment because I’m not sure I can do better. I’ll continue to take in scientific studies and ask for what treatments I want, because I know I need to be in control of my healthcare and not rely on medical professionals to manage it for me.

How is your doctor? Have you changed doctors?

Dr Schreiber in 1943. Courtesy of the Library of Congress, USA.

Rhodiola and vitamin B worked well for me – an unintended experiment

I read Rhodiola helps with fatigue and boosts energy so I specifically bought multi Vitamin B supplements with Rhodiola and took them without any immediate noticeable improvement or problem. I chose Rhodiola because:

Rhodiola is … said to fight fatigue , enhance mental function , increase general wellness , improve sports performance. A few double-blind studies involving a single proprietary product support the first two of these uses, finding that the use of this particular rhodiola extract by people in stressful, fatiguing circumstances may help maintain normal mental function. (info from NYU Lagone Medical Centre)

When my usual brand of Vitamin B supplements with Rhodiola was out of stock, I tried a new brand without it. I still seemed to get some benefit from them, however I also purchased a new brand which had Rhodiola in them and had both bottles open at the same time. Sometimes I took the one with Rhodiola and sometimes without. An unintended scientific experiment (well, maybe not scientific!) on myself. Turns out I noticed that the ones with Rhodiola do make a difference to my day. I was really pleased to notice that, it feels like one more tiny thing I can do to feel less fatigued and have more energy!

Have you made interesting discoveries about supplements you take? What supplements help you the most?

Vitamin B12 injections

Months ago I investigated Vitamin B12 injections, after re-reading Dr Myhill’s rationale for using Vitamin B12 injections. I’d broached the topic with my doctor ages ago and he said I wasn’t deficient in Vitamin B so I didn’t pursue it back then. After seeing another doctor just to get a second opinion on my treatment, she didn’t want to take me on as a patient but said she would give me the injections if my regular doctor wouldn’t. When I rang her office later to make an appointment, they said I would have to make an appointment for a prescription for the injections, then go to the chemist to buy the the Vitamin B12 vials, then come back for another appointment for the injection. Sounded like more energy expenditure than it was worth, so again I left it for a while.

Then I read that I could buy the Vitamin B 12 injections without a prescription so I asked for them during my next visit to the chemist. The pharmacist was very nice and asked “are you injecting them yourself?”. I said I’m not planning to…but then he said it was easy and explained how to do it so I purchased some needles and a needle disposal container and away I went.

The first attempt was laughable. I have fainted during blood tests before and thought I was squeamish, so my partner volunteered to jab me in the bottom cheek.  I offered it up, ready for the jab. Waiting, waiting…(and that is the worse part)…but nothing. He couldn’t do it! “I didn’t want to hurt you!”.

Taking the needle myself, I found a little fold of fat near my belly button and slid the needle in. No pain, no fainting. It stung a tiny bit after I withdrew the needle and thats all.  Hurray! There are lots of guides online about giving yourself injections so perhaps read those if you need some confidence.

Now I wasn’t immediately bouncing off the walls after the first Vitamin B12 injection, disappointingly, but one thing I did notice immediately was I felt warmer. I usually have really cold hands and feet but the Vitamin B 12 injections helped a lot with that symptom.

I inject 0.5ml (half a vial) two to five times a week and it has made a small difference. I’m much less squeamish about giving myself injections but some days I don’t feel like jabbing myself, or getting to the chemist.

Dr Myhill suggests trying for two months then assessing so that is what I’m doing today! Overall, it wasn’t the difference I was hoping for but it is enough of a difference for me to persist with the treatment.

There are three vials in a box and they are about $12 a box, plus the cost of needles and the disposal container (roughly $1 per injection).

Do you give yourself injections or get Vitamin B12 injected?

Getting dressed and ready for work with ME

No matter what the fashion blogs say, I’m here to tell you that you can wear yoga pants or leggings to the office. Also, wearing tracksuit pants everywhere seems to be the fashion now so that can only be good news for us! I’ve recently finished working, at least for a while, so I thought I’d write this post while I still remembered!

Going to the office, circa 1955. From the Library of Virginia.

I graduated from not being able to work at all, to a few hours at home, then a few hours at home and at work, so I hadn’t been in the office for more than a year. I found clothes uncomfortable so couldn’t get back into fitted shirts, suits or high heels, just too painful.

Instead I wore yoga pants, long silk and modal blend t-shirts, loafers or flat boots with socks (poor circulation so I always have cold feet) and to make it professional, I add a blazer and colourful pashmina or scarf. The idea of the colourful scarf was also to distract from the fact I don’t wear make-up any more, plus it is warm and comfortable.

Loose dresses or long elastic-waist skirts are comfortable (as well as hiding hairy legs – who has the energy for hair removal!) and maternity trousers have a lovely comfortable stretchy panel that is kind to the midriff. Sorry fellas, maybe just stick to elastic-waist trousers.

If you are transitioning from home back to the office, it is a little like dressing for long haul travel! Wear layers so you are warm enough. I tire out so quickly if I’m cold, and it stiffens my muscles which causes pain.  You might also want to take an eye mask if you are planning a little shut-eye under the fluorescent lights. I used to nap in my car.

Also like a plane, it will be full of germs. Take anti-bacterial wet wipes or hand sanitiser, who know who has been using your desk!

I took a hot water bottle to work instead of heat packs (I didn’t want my heat packs tainted with the horrible smell of a work microwave!), or maybe a small blanket.

Pack things you can eat. I couldn’t eat anything at the work cafeteria, nor did I have the energy to walk up there.  Pack painkillers and any medication or supplements you need to take. I kept a little jar of D-Ribose in my work bag.

Make it comfortable for you. I didn’t want to cart too much stuff to work, but it was worth taking a tea pot and some peppermint tea and a packet of gluten free biscuits. Be kind to yourself. A cup of tea and a biscuit can make a difference!

If your desk hasn’t already been set up for you see if you can have a desk assessment, or even better an assessment from an occupational therapist, to make sure the conditions are best for you.

Take enough breaks and leave enough energy to get home safely!

Really, what you wear to work is the least important thing. Just make sure you are as comfortable as you can be in the environment, then you can concentrate on being productive.

(I wrote more about getting back to work here if you are interested.)

Massage and infra-red sauna – together

Today I have had an infra-red sauna, followed by a 45 minute back, shoulder and arm massage. Blissful.  I’ve written before (well, half a post, I accidentally deleted the other half and was too crook to re-write) about infra-red sauna.

Dr Myhill had mentioned them so I first tried it four months ago and now I’m saving up to buy my own. The first time I had one, I came home for a shower afterwards and felt 100% for about 20 minutes! It was amazing, I was in the shower and shocked at how good I felt. The next time I had a sauna, I felt 80% for about an hour, pretty great. Of course I went back for more. This time I felt about 50% for a day and a half after the sauna (by comparison I usually feel 30%, or 40% on a good day.

The first times I had a massage first, then a sauna, which is an added bonus. I’ve tried a couple of different brands of saunas and have to say I think Sunlighten ones work best for me. I bought a bundle of sessions on Groupon at a place close to home, but the effect wasn’t the same.

It is also better to have a shower straight after. That is the beauty of the place I went to today. They have a lovely two-person sized Sunlighten sauna so I can lie down with my legs up (in the yoga pose viparita karani) and rest, then I step into a shower just outside the sauna. I don’t have to get dressed, just wrap a towel around and head into the massage room.

I don’t get the same boost anymore, it has evened out to feeling a little better afterwards and it slowly tapering off.

As far as massage then sauna, or sauna then massage, after experiencing both – sauna first! Even if you don’t combine it with a massage, I still like it, just take a few minutes before heading home to relax.

I usually have a massage once a week for muscle aches and it is easier to combine it with a sauna instead of having to head out for two appointments a week.

Colonic hydrotherapy for constipation with ME

You might not want to read this, I’m not sure I even wanted to write this! Please don’t write me off as a nutbag for even mentioning it.

Firstly, there is no scientific evidence for colonic hydrotherapy. (Not that scientific evidence has done much for treating ME so far!). A friend had raved it about and it seems to be on the to-do list of every holistic retreat I’ve looked at.

I had been uncomfortably bloated and constipated for more than a week. Large doses of vitamin C helped a little, I was already drinking plenty of water and eating fresh fruit and vegetables and laxatives gave me awful cramps. I was also afraid of taking any more painkillers while I was already so constipated as codeine make its worse.

So I gave colonic hydrotherapy, or colonic irrigation, a go. I chose a place that a friend recommended and it was very clean. The staff were reassuring and thorough in explaining how to use the equipment, a Libbe brand ‘open’ system, which means there is a clear tube so you can see the waste matter. I was left alone and in charge of the water flow, which was a gentle gravity-pressure flow. I’d read in some places they stay and massage your stomach, which I did not want!

It wasn’t uncomfortable and I did get rid of a lot of waste. I felt fine immediately after, plus they gave me an electrolyte drink and probiotic and let me sit in the lounge for a little while and rest.

When I got home I was wiped-out tired and went straight to sleep. I was also tired for the following two days but my abdomen was much more comfortable.

I would rather not have had one, but it helped with the constipation and in the week following my bowels have been fine. I wouldn’t recommend it ‘just because’, as there are risks associated with it.

Have you tried it? Or thought about it? What do you think?

Dr Chia’s Equilibrant – second report

Hello,

Two weeks ago I wrote about starting to take Equilibrant. I had read about Dr Chia’s research and was encouraged by the science and Dr Chia’s personal story, as his son had post-viral chronic fatigue syndrome after an entrovirus infection, or more correctly myalgic encephalomyelitis.

For the first two weeks, I took one tablet a day with food and experienced mild dizziness. This decreased and after another week I increased the dosage to two tablets a day. I noticed less dizziness with this increase, although when I tried three tablets yesterday the dizziness was worse.  I plan to stay on two tablets a day for another week, before trying to increase again.

I haven’t noticed any other symptoms (except I have been constipated, sorry if that is TMI, and wondered it it is some of the ‘fillers’ in the tablet.) According to the packet, aside from the active ingredients, the Equilibrant tablets contain:

Other Ingredients: Dextrose, Cellulose, Silicon Dioxide, Cellulose Gum, Magnesium Stearate (Vegetable Source), titanium Dioxide, Glycerine, Stearic Acid (Vegetable Source), Yellow #5, Blue #2 and Carnuba Wax. 

We would all prefer it without these ingredients and colours, we don’t need them.

I’ll keep you updated on how it goes. Apparently you need to take it for three to six months. One month in and no improvement in symptoms yet!

Working vs not working with ME (or the time I lost my job)

Work is important to me and there are so many things I enjoy about working but it isn’t easy with illness.

At first, my workplace was sympathetic, holding my job for me and letting me take leave without pay when my sick leave ran out.  After about six months, I could do some work – eight hours a week from home. I was ultra keen to get back to work and thought I’d increase my hours pretty quickly but it took about a year before I could increase them or be well enough to into the office.

Going back into the office was challenging. I have noise, smell and light sensitivities, plus a lot of people wanted to chat to me and find out how I was, so I didn’t get much work done the first five times I was in the office, but the occupational health and safety officer was supportive and told me not to worry about that, I’d soon settle back in. I wrote more about it in this blog post, Work and ME.

Getting dressed for work probably deserves its own post! It took effort to dress, pack food (as there was nothing suitable for me to eat in the work cafe), painkillers and the work laptop and papers, then drive to work (about an hour round trip door-to-door).

After increasing my hours, I was always evaluating whether I could do more. Both to earn more money, contribute more to my team and also because job cuts were looming and I didn’t want to lose my job. It shouldn’t have been so hard, because logically my health should have come first, but I found deciding how much to work difficult. I would go into my doctor’s office and negotiate, always trying to push for more and he joking called me a ‘bully’ for trying to get him to increase them when he felt I wasn’t ready.

Sometimes I found it hard to meet the number of hours I was meant to do, I wrote a little  about it here.

My dilemma was resolved when my position was cut in a restructure. About half my colleagues lost their jobs as well.  I was upset about losing my job and the process seemed to drag on, which was stressful and not great for my health.

I finished work a couple of months ago and am only now reaching an equilibrium. When I first finished work, I did too much. Too much socialising, exercise and housework, to try and make up for the times I’d given up socialising or exercise in order to have energy for work. I also felt like I couldn’t afford to keep cleaners because I wasn’t working anymore.

Then I was miserable because I felt worse, when I expected to feel better. So I cut myself some slack and didn’t make any appointments (social, massage, sauna, yoga classes), borrowed a huge pile of books and movies and just relaxed. It helped!

This week I’m back into a gentle routine, going out for a yoga class and infra-red sauna and massage appointments – feeling better, not using more energy than I have and hopefully saving a little for my body to use for recovery.

I still miss my job but I’m planning to use the next six months to work on my health instead, then think about a job that suits me and how my health is then.

How are you? Are you working? Do you want to?

Tracking your symptoms with apps or on paper?

Do you track your symptoms and activity? I used to but fell out of the habit once I stopped improving and started sliding backwards in my recovery because it was, quite frankly, dispiriting to see I wasn’t doing as well as I had been. It is much more fun to enter in activities when you can see you are doing better week by week.

So that is why I stopped. But it is time for me to start again, at least to provide evidence to the doctor, if not keep myself accountable and make sure I’m resting enough.

I used to use Bruce Campbell’s activity log  printed out and personalised a little. I’d sit down in the afternoon and fill it out, then cart it along to every GP visit.

Recently I made an appointment with Griffith University’s National Centre for Neuroimmunology and Emerging Diseases. They have released their own free app, CliniHelp, which I downloaded and had a look at. There are 35 questions to be completed each week on physical and emotional health, medications, visits to health professionals and supplements (and why they ask me my height weekly is beyond me!). The Nutritional survey asks you where, what time, and what you had for breakfast, morning tea, lunch, afternoon tea and dinner. And I didn’t even get to the monthly survey. It all seemed to long and repetitive to me, so I gave up.

I have downloaded and enjoyed using the Sleep Cycle app to track the duration and quality of my sleep, along with resting heart rate in the morning. Taking my morning heart rate is an important measure for me and I kept that up, but I like how Sleep Cycle takes it for me. The app was about $3, is quick and easy to use, I have the ability to add in factors during the day that might affect my sleep (like an outing or yoga session) and gives me lots of satisfying statistics.

I’ve asked around about other apps and two which have been recommended are Pain Tracker and My Pain Diary. I haven’t tried these but considering it.

Another one I’m considering is ME Diary, which has two reviews in the App store – one terrible and one great – so I’m still weighing it up.

Do you track your symptoms, activities or progress? How do you do it?  Any tips?