Going Private (nothing to do with health care!)

To all regular readers of this blog - I've decided, with reluctance and after much thought, to "hide" this blog and make it available only to pre-approved people with a password.

In the past, as I've written about my own health situation and the politics surrounding Myalgic Encephalomyelitis, I never expected my health to improve to the extent that I would work again. I'm now well enough to begin looking for part-time work. Unfortunately I'm in a country and an economic climate where discrimination of all kinds appears to be rife. Here in Australia I've been advised by many that I will face discrimination for having no local work experience, no local qualifications, for my age, for having been out of the work force for several years... all of this on top of having been diagnosed with an illness that still goes unrecognized and derided by the majority of health professionals. Thus I've decided not to prejudice my job hunt any further - any intelligent recruiter these days will look me up on the internet and find this blog without difficulty.

If you would like to have access to this blog in the future, please leave a comment below with your email address, or write me directly on: nicolareiss@gmail.com, and I'll send you the password (as soon as I've thought one up!).

Myalgic Encephalomyelitis: International Consensus Criteria

The Journal of Internal Medicine has just published the ME: International Consensus Criteria. This document, prepared by a group of practicing physicians with a long history of treating patients with ME, is a practical tool to aid doctors in the diagnosis of ME.

The document can be accessed here.

Out and About

A participant on one of the ME forums commented a while back that those who recovered no longer hung out on the forums to share what they'd learned about getting well. Now I understand why: after four years with no social life and unable to enjoy every day activities, I now have no inclination to stay indoors tapping away on the laptop. I feel like I want to be out meeting people, going to every concert, seeing every art exhibit, taking every class, walking every path, shopping in every store, sitting in every café... the urge to get out and enjoy life is strong! So here are a few photos taken in the past few weeks as I get out and about here in Melbourne. Click on any photo to see a larger version of it.

My local train station. 

A foggy morning in North Fitzroy. Melbourne and Sydney are well-known for the cast iron decorations on many of the older houses. 

     

Carlisle Street: click on the photo to see the "Texas Milk Bar" lettering; the old milk bars are close to extinction. 

Sandringham Beach (no, not Norfolk!)

Sunset over Carlisle Street. 

             

Looking out over Port Philip Bay.

A different person

My older brother dropped by the house this morning. We hadn’t seen each other in over two months and he was taken by surprise:  “You’ve really lost weight – you’re almost a different person!”

I’m gradually getting used to my new body, which is both much slimmer and much healthier than last year’s model. Sometimes I think that I’ve been trapped in the wrong body for most of my life and getting diagnosed as fructose intolerant has been the answer to many previous problems.

After this long battle everything is getting easier. I now function at around 80% of where I think I should be for my age – compared to about 40% this time last year. I’m three months into my “gut healing” diet and a week into the pill-popping regime prescribed by my doctor. The only items of clothing that still fit are my socks. Not having worked for over three years my funds are a little low, so I can’t go out and replace my entire wardrobe as I’d love to. But I live in a swish part of town generously apportioned with charity (“opportunity”) shops where some careful searching finds me well-made and barely-worn clothes from up-market stores for just a few dollars. Clothes shopping for a size 10 “small” is so much fun – suddenly I look good in almost everything!

Federation Square, Melbourne: with Krispin Fernandes, visiting from Timor Leste.

Lyme Disease

I'm re-posting a post from Facebook because so many people with ME ("CFS") actually have something else, and very often that "something else" is Lyme Disease. Here's the post:

"I was dx'd with ME/CFS for 17 years before finding out I had Lyme, Bartonella and Babesia last November. Since being on treatment for the last 7 months, my life is returning! I am getting my life back after 17 years. My passion now is to ask all of my ME/CFS friends to consider getting retested for Lyme Disease. Even if you had tests and they were negative (mine was three times from 1993-2004), and/or even if you cannot recall being bit by a tick, or think you cant have it because you don't live in a "Lyme" state.


The usual test given (the ELISA test) to test for Lyme is 50-59% wrong Always. You need to get a western blot test at a reputable Lyme lab to accurately test you. I can help you with this with resource on Push Pin Angels.

This is my story that starts when I first found out I was Lyme positive till this week. I pray you all consider getting re-tested. There is a page on the web site above entitled "first things first..." that describes the process of getting retested, and answers your immediate questions.

Remember that Dr. Mikovits reported that of the ME/CFS patients she tested for XMRV, 40% had Lyme as well. And there are two other studies now reporting that so many ME/CFS sufferers are testing positive for Lyme.

Please consider getting retested? Thank you for reading this!"

Doing Well

I’ve now had my third visit to the “CFS Discovery” clinic here in Melbourne – an odd name, but a fortunate discovery for me. Three months into my “detox” diet, initiated following a diagnosis of fructose intolerance by the clinic, I am doing well. In fact I’m doing far better than I ever expected, and I’m enormously grateful that this clinic exists. The doctors, nurses, and other clinic staff are terrific – professional, competent, thorough, and friendly. Following additional tests my diagnosis of “ME/CFS” has been confirmed using the Canadian Consensus Criteria. (A word here: the clinic uses the CCC and not the stricter Nightingale definition of ME; the clinic also uses the term “CFS”, however they treat the disease on a strictly biological/physical basis.) I will give further details of my diagnosis and test results in a later post. At the moment I’m still reading through the results and information given me by the clinic, and organizing all the medicines and supplements that have been prescribed.

Physically I’m now able to go out most days. I can attend meetings and classes (I’m taking a Spanish evening class), and can once again enjoy sitting in a restaurant or café (I can’t actually consume anything they offer, but my extreme noise sensitivity is gone) talking to friends. I can go for a walk or wander around the shops for one to two hours. I frequently skip my afternoon rest, and I sleep 7 – 8 hours a night. I must still stay within my limits – when I try to do too much (a yoga class, too much socializing) then I need more rest and the brain fog/general malaise returns. I am still sick, but the difference between now and a year ago is huge.  I have added a range of vitamins and supplements to my diet, but haven’t yet begun taking prescription medication (soon to begin). It is clear that in my case at least, the fructose intolerance (and possibly also celiac disease) is a key factor in my illness. I advise anyone and everyone with any kind of “mystery” ailment to get tested for food intolerances, fructose and lactose malabsorption, and to test for celiac disease. These problems remain unrecognized and under-diagnosed. 

Melbourne city center: after losing another 3kg since April, my once too-tight clothes are now looking decidedly baggy!

Birds in the Bush

Some weeks ago I drove up to Tanjil Bren in the mountains to the east of Melbourne - not exactly the Alps, but there is skiing at Mt Baw Baw in the winter (i.e. now!). There's even a wiki for Tanjil: http://en.wikipedia.org/wiki/Tanjil_Bren although I think calling it a "town" is rather stretching things; I'm not even sure it would count as a village in the UK, as there's no pub!

Here's the view on the drive up. It takes a little over two hours to get there. It used to take longer. The last time I did the drive, the last section of the road was still unpaved.

And here's a mailbox that sits at the end of a long drive, where we stopped to pick Spanish chestnuts.

The birds are what I enjoy most about Tanjil. Here's a flock enjoying breakfast on the terrace of the forest cottage owned by my brother, where we stayed. The birds most commonly seen near the feeder are king parrots, crimson rosella, kookaburra, and currawong.

You can click on any photo to enlarge it. In this photo on the left you'll see three different birds sitting in a row on the fence - a rosella, a kookaburra, and a king parrot.

This was the view from my bedroom window - although I didn't actually sleep in the bedroom. It was too cold! I slept on the lumpy sofa in the main room with the wood heater, which we kept burning all night. At 838m above sea level (2,749ft) it was very cold, staying just above freezing at night while we were there (it will certainly be colder now). The elevation also had a direct impact on my body. When I stepped out of the car on arrival my legs turned to lead and I moved with difficulty, heart pounding. By the second day I was able to walk around a little, but taking it very, very slowly. In contrast, a few weeks later here in the city I can now sustain a good clip for ten minutes or so when I need to dash for the train, or a normal pace for an hour of walking around the shops. I couldn't do that a few months ago.

More notes on healing

I've now been on my leaky gut healing diet for 3 weeks (no fructose, no gluten, no processed carbs, no grains, no sugar/sweetener of any kind, no legumes, no nightshades, no nuts, no dairy, no fruit, no spices) and I was on a less limited but still strict diet for about a month before that. I find it easy to stick to - my cravings have all disappeared, and I don't feel particularly hungry. I eat 3 meals and a couple of snacks a day. It's easy to manage as long as I eat at home. In fact, it makes my life much simpler and easier. I eat a lot of protein (chicken, beef) which makes it satisfying, along with plenty of fresh vegetables cooked with olive oil. My snack food is a cooked mixture of quinoa with sunflower, pumpkin, sesame and chia seeds. I drink decaf tea with rice milk, and plenty of water.

I've been gradually feeling better, but the big difference kicked in about 5 days ago - and it's a huge difference. My brain fog is almost entirely gone - not totally, but close to it. I feel like I have my brain back - I can think clearly again, and that's wonderful! My dizziness and orthostatic intolerance have gone, the lethargy has gone. The 'general malaise' - just feeling sick so much of the time - has gone. My energy is up about 15% - 20% - I hope this will improve, but I'm not yet taking any kind of supplements at all, so I'm happy with what I have so far.

My noise sensitivity has improved, though not entirely disappeared. I’m still sensitive to sun. My stomach issues are much improved - no more bloating and gas, regular BM. Still have slight indigestion at times. Mouth ulcers have gone. Generally better able to deal with stress (still some work to be done, but it's improved). My mood has noticeably improved since I stopped eating fructose. I lost 8kg (17 lbs) between Nov-Feb, and have lost a further 5kg (11 lbs) since Feb – the weight loss was needed and is welcome. I feel much better for it.

I still feel very stiff and achy when I get up in the morning – no, it’s not age! My 86-year old mother doesn’t feel this. I still get some brain fog when tired, when talking to people or in a noisy environment. I still have some noise sensitivity, and can still get quickly unnerved in certain situations with only a little more stress than usual. I’m still resting in the afternoons, and still limiting my exercise. I still have some concentration problems, especially when reading; I still have an issue with temperature control – either feeling too hot or too cold very quickly.

I have tested positive for fructose malabsorption. My serological test for celiac disease was negative, but since doing the test my sister was diagnosed positive using the genetic test, so I am now having that done. It is possible to have both ME and celiac disease.

I tested negative on lactose malabsorption and IgG food antibodies – however I have heard that many people with ME (“CFS”) test positive on these. I’ve been diagnosed with ME/CFS according to the Canadian Consensus Criteria, and have been sick for four and a half years. It is generally acknowledged that there are different types of ME, so that what works for one person may not make any difference to another. On the other hand, it would make sense for anyone with symptoms similar to those of ME to get tested for celiac disease, fructose and lactose malabsorption, and IgG food antibodies. In most places your GP (primary care physician) should be able to order these tests.

 Had lunch out with family members today - first time to enjoy eating in a restaurant for several years. 

Chase Community Giving


Chase (the bank people) have set up an interesting system for deciding who gets some of their money. Instead of figuring out for themselves who is most deserving, they leave it up to the public to vote. So an institution doing serious research that could, in the end, save hundreds of thousands of lives (not to mention saving the US national economy billions of dollars on medical bills and disability payments) is left using up precious time to scramble for votes among patients, many of whom are bed-bound without the energy to use a computer. I guess I'll pass on social commentary and the questions surrounding corporate social responsibility and how it is managed. Let me just say, if you're reading this, please join Facebook and then 'like' Chase Community Giving, and then vote for the Whittemore Peterson Institute - they are working hard to find a cause and a cure for myalgic encephalomyelitis (aka "CFS") and I am enormously grateful to them. And I've copied the next bit from someone who writes far better than I do, Laurel, who writes the Dreams at Stake blog:


"In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to: http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" on top of the page
3. Go to: http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease."

Vic Market

I'm off to the Queen Victoria Market tomorrow morning. A trip to the market used to be a priority on any Melbourne visit. When I arrived back early last November I couldn't imagine ever having the strength to get to the market again. It involves a short walk (10 - 15 minutes) to the local train station, a shorter walk (5 mins) from Flinders Street station to the tram, and then a quick hop from the tram into the market - and then the hubub and size of the market itself. I used to wander around for hours, the Sunday morning extended version with entertainment being a special treat. But tomorrow will be a well-planned affair. Arrive at 10:30 am, a brief visit to the food hall (a mecca for foodies!) and then out to the 'shed' to look for a pair of sheepskin boots to keep my tootsies warm over winter. Leave by noon. Back home by 1 pm, lunch (cooked in advance), and ready to lie down before I turn into a pumpkin at 2 pm. No plans whatsoever for Friday - recovery time.

My disgust at how people with M.E. continue to be treated by those in authority in the U.K. is so deep that I am left without words. Fortunately others are not so bereft. One of my favourite bloggers is Nasim Marie Jaffry and you can read what she has to say about the editor of The Lancet here.

And for those of you who have a few pennies to spare (even one pound or one dollar a month will be put to good use) I urge you to join the Count Me in Campaign to raise funds for research into neuro-immune disease at the Whittemore Peterson Institute. Thank you.

Random Thoughts on Healing

"Nothing herein should be construed as medical advice"

There is almost nothing more certain of bringing about a relapse than writing about feeling better. Four weeks of eating foods I normally avoid, in order to get tested for various food intolerances, left me with a noticeable worsening of symptoms: fuzzy brain, lethargy, stiff and achy limbs, and stomach problems. Now that the tests are over and I'm reverting to a wheat-free, dairy-free diet I'm picking up speed again. And I'm now more convinced than ever of the role of diet in treating this disease in some patients.

I'll admit I'm a little slow to catch on. Partly that's because I've tried avoiding different foods in the past with limited effectiveness; partly because there's so much information out there on the internet that I find it overwhelming, confusing, and frequently contradictory. Aside from the merest handful of doctors taking an interest in this disease, patients are left to scrabble around on their own in search of answers. This makes for a very large group of vulnerable people (estimated 17 million worldwide). Many are simply far too sick to use the internet or libraries; many are too sick to make it out of bed and into a clinic; many are just clinging on, burdened with other responsibilities such as taking care of equally sick children; most don't have the scientific background that would enable them to understand the published research papers that shed light on the illness.

A couple of recent readings are driving me forward at present. One is a recent blog entry written by a doctor who has ME, as do her daughter and husband. Dr Jamie Deckoff-Jones is read and appreciated by thousands of patients for her openness and willingness to discuss the disease and treatment that she is trying out on herself. It is worth reading as much of her blog as you are able:

http://treatingxmrv.blogspot.com/2011/03/treatment.html

I look in on the patient forum "Phoenix Rising" from time to time (with thanks to a good friend who encourages my participation). I avoid most of the patient forums, but this thread was brought to my attention and I found it interesting enough to copy and re-read:

http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why

The tests that I've had to date show that I have a "leaky gut" problem (aka "gut mucosal barrier dysfunction") and a problem with fructose malabsorption. Unfortunately I have another 3 months to wait for further test results and my next appointment with the doctor. In the meantime I am adjusting my diet in line with the test results. The more I read the more convinced I am that diet underlies many health concerns. I would encourage everyone with any health problems at all (including mental health) to get tested for food intolerances and allergies, lactose and fructose malabsorption using the hydrogen breath test, to try and figure out if you have a sensitivity to salicylates, and to test for coeliac (celiac) disease – one of the most commonly undiagnosed health problems (it can be asymptomatic but still cause internal damage). Work with a recognized, qualified medical practitioner whenever possible. And read widely!

Feeling Better?

At one time I thought: “if it doesn’t get me back to work then I don’t want to know” when considering a “cure” or treatment for M.E. But in the past two months I’ve picked up around 10% in my overall health – and that 10% makes a big difference.

I can now drive short distances. This means I can go to the library, do some grocery shopping, get a hair cut, and go for some medical appointments without needing to ask for help. The sense of independence this provides is liberating – I am so dependent on others for many crucial aspects of life – and lifts my mood on days I go out.

The question I’m asking myself now – and if you have M.E. you may be thinking it too – is what have I done to feel better? Following are the main variables that have changed in my life in the past four months since moving to Melbourne from Malta:

Less exercise: I no longer need to carry my groceries – either someone else is doing the shopping, or I go by car; I no longer need to do all the cleaning myself; I no longer use stairs on a daily basis; I no longer have cats to clean up after and entertain (I miss them, but that’s a different matter).

Diet: I have been careful about diet for a long time, but have recently made further changes: cutting out sugar and sweet things entirely; cutting out wheat and gluten almost entirely; greatly reducing the amount of carbohydrates (rice, oats, bread, pasta, etc) eaten; reducing the amount of food I eat and eating smaller portions for all meals; limiting fruit to 1 piece a day (or less). I am in the process of getting tested for a wide range of food intolerances, including testing for celiac disease, so expect more adjustments to come.

Climate: Melbourne has a significantly drier climate than Malta, where humidity causes a lot of discomfort for people with ME and MS, in both summer and winter.

Noise: I now live in a relatively quiet suburb where I’m exposed to far less noise from neighbours, traffic, and local construction projects. The level of noise pollution in Malta has reached intolerable levels, and caused me a lot of stress.

There are other differences, but I think these are the most significant. Or it is just in the nature of this disease with its fluctuating symptoms that I happen to feel somewhat better at present. I must still be on my guard: a couple of hours away from home, spending time with another person, will still leave me feeling brain-fogged and drained. Ready to return to work I am not.

Visiting my father's photographic exhibit at the Monash Gallery of Art on one of the hottest days of the summer. 

UK PACE Study Highly Misleading

I've sent the message below to some journalists. Please feel free to send this message on to anyone else you know, journalists, doctors, whomever. It is extremely important that we do our best to counteract this highly misleading study that has just been published in the UK. It will have a negative impact on us all.

Dear -------,

Today the Lancet has published a study regarding "Chronic Fatigue Syndrome" which is highly misleading. I would very much appreciate your taking the time to read the following press releases and publishing a piece in ------- that gives accurate information about the problems with the PACE study.

Patient groups all over the world are aghast at this new study - we all know from personal experience (as I assure you I do) that exercise makes the condition far worse. This study will literally endanger the lives of millions - especially vulnerable children who are unable to speak up for themselves if forced to exercise beyond their capacity.

This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".
However the Oxford criteria are so vague as to include almost anyone who feels "tired" and do NOT account for people with the neurological illness M.E. as identified by the WHO and the more commonly accepted Canadian Consensus Criteria (available here: http://sacfs.asn.au/news/2010/08/08_13_canadian_consensus_case_definition_revisited.htm)

Please see the statement from the ME Association in response to the study:
http://www.meassociation.org.uk/?p=4607

And the statement by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

This press release from the ME/CFS Worldwide Patient Alliance also came out today:
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf

This is how the NY Times has reported on the study:
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3


I also recommend watching this trailer for an upcoming film about M.E.:

http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be

Please let me know if you have any questions. Thank you very much indeed.

XMRV and me

I have not yet had the opportunity to get tested for the XMRV virus – the third human retrovirus discovered following HIV (AIDS) and HTLV (leukemia/lymphoma). There are no labs here in Australia capable of testing for this virus, and – so I’ve been told – no plans to set one up. So anyone here who would like to be tested has to figure out how to get their blood samples sent off to a lab in the USA or Belgium. I will eventually get tested – one of the leading world specialists, Dr Kenny de Meirleir, comes to Melbourne regularly to see patients and arrange for tests. The advantage of getting tested is to enable a decision about taking anti-retrovirals. These are the drugs currently accepted for treating people with HIV/AIDS. In the USA some people with ME (“CFS”) are already taking anti-retrovirals, even though no large-scale drug trials have been carried out (see, for example, this blog written by a medical doctor who tested positive for XMRV: http://treatingxmrv.blogspot.com/).

On the political side of things, the battle rages on – especially in the UK. Studies carried out in the US by government agencies as well as the leading private research institution for research into neuroimmune diseases, the Whittemore Peterson Institute (WPI), have shown undeniable links between people sick with ME (“CFS”) and the XMRV retrovirus. However the WPI is still not winning the government research grants that ought to be coming its way given its excellent record in this area. In the UK both the media (including, disappointingly, The Guardian) and government health authorities are in complete denial (to be kind – the truth is more likely “steeped in corruption or willful ignorance”) over the importance of recognizing and dealing with this health catastrophe that affects around 250,000 people in the UK and is estimated to cost the government billions of pounds annually in lost tax revenues, disability payments, and health care. Estimated ME sufferers worldwide are around 17 million.

If you would like to help make a difference in my life, and the lives of millions around the world suffering from devastating neuroimmune diseases, please consider donating to the WPI on a regular basis (I do!): http://www.wpinstitute.org/help/help_donation.html

For anyone interested in the research and the key documents related to XMRV, please follow these links:

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html


The New York Times has been especially good about covering the issues. Here are some of their articles:

A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/

Happy New Year Everyone!

Huge changes in my life – I am now living in Melbourne, Australia. Last year I applied for, and after many months was granted, residence in Australia. I arrived here on the 6^th November. I came on an immigrant visa category known as “last remaining relative”. At the time of application I was the only member of my immediate family who did not live in Australia. My parents, brothers and sister, and a growing collection of in-laws are all either Australian residents or citizens. I had held out for as long as I could.

Lemon Tree and Bottle Brush

Melbourne is a city of close to 4 million inhabitants. Aside from an academic year in London a long time ago, I’ve never lived in a big city. I’m a small-town gal at heart, and feel lost in the sprawling, anonymous suburbs of this place. Only the unusual warbling calls of the indigenous birds and the occasional scent of eucalyptus on a warm day hint that this is a very different continent. The suburbs of Melbourne feel just as far from the more evocative Alice or Darwin, Kakadu or the Great Barrier Reef as a suburb of London or L.A.

White picket fence in the suburbs

Next on the agenda: doing the rounds of doctors in the hope of finding answers. At least here there are a few doctors who are willing and interested in treating ME – even if they do not yet appear to distinguish between those with neurological ME, and others with a variety of illnesses that are mistakenly diagnosed as “CFS”.

I have not made any New Year’s resolution to keep the blog going. Either I will or I won’t. To find out, keep checking back!