Tag Archives: research

I have no voice

As I’ve mentioned in recent posts, when I first contracted M.E. I was determined to raise the profile of my illness.  Back in the early 1990s nothing was known about the disease, it wasn’t in the public or the medical professional’s field of consciousness, and only a handful of people world-wide were fighting for M.E. patients.  I took part in every study going.  I wrote articles in the press.  I wrote to any ill-informed doctor I ever saw, educating them on my disease.  I attended conferences even though the effort nearly killed me.  But it was all for nothing.  No-one was listening.

The cost of activism, in terms of symptoms and energy expenditure, was too much for me and I realized I had to focus on my health instead which I did for many years.  However due to the super-human efforts of exceptional patients like Jen Brea M.E. has lately received international attention, so I thought I’d have another go at getting my voice heard.

There are some exciting research projects going on in the M.E. world and I’ve written to the researchers, eg. Ian Lipkin, Ron Davis, offering my 22 years worth of M.E. riddled body for study. They haven’t afforded me the courtesy of even replying, let alone taking me up on my offer.  I was told by the ME Association that, due to the fact I took part in the world’s only longitudonal study of severe M.E. patients (the CHROME database), that my bodily fluids would be amongst the first to be collected and stored at the UK’s ME bio-databank, which has turned out not to be the case.  They are only collecting samples from severe M.E. patients in the London area to cut down on travelling costs even though I’m willing pay for sample collection here in the north and Fed-ex it to them down the M6.

Severely affected patients are excluded from almost every study ever conducted on M.E.  How shocking is that?  Would you study Cancer and only include people who have a small skin melanoma and not people with Leukaemia?  Would you study heart disease and only include people with angina, not those with congestive heart failure?  Would you study allergies and only include people with mild hay fever and exclude anyone who has life threatening anaphylaxis?  Of course not, because you’d have a very skewed picture and the treatments to cure a small skin melanoma would not be the same as the treatments needed to cure Leukaemia even though they are both cancers.

If you studied cancer, would you exclude anyone who had recovered?  Surely you’d want to find out why they’d recovered.  It’s very rare for someone as ill as me for as long as I have been to make any kind of recovery from severe M.E. yet here I am, OK not ‘better’ but a million times better than I used to be.  Yet no-one is interested in finding out why!  It makes me want to scream.

The only M.E. patients well enough to travel to hospitals for research studies are the mild to moderately affected.  The severely affected are in their beds too sick to crawl to the loo.  So, hey, let’s just ignore them – what can they tell us about the disease anyway right?!!  The longer you have severe M.E. the more health problems you seem to accumulate, yet long-term severe patients are the most ignored of all.  Going back to cancer as an example, would you only study people who had cancer for 6 months or people who had lived with the disease for 10 years and managed to survive?

The world may not want to listen to a sick old timer like me, but thankfully they are listening to Jen Brea who this week made the first TED talk on M.E.  I hope all her effort isn’t in vain.  I hope M.E. researchers finally wake up to the fact that the answer to this disease lies in the severely affected patient’s hands, particularly those who have been sick for many years, and makes an effort to reach out to us.


Blind Alleys

I’ve been ill with M.E. for a long time.  A very long time.  And I have to be honest and say that nothing much about the disease either excites or surprises me these days.   That’s because I’ve heard it all before and there is nothing you can tell me about M.E. that I don’t already know.

The past few years have felt quite exciting for the M.E. community and I know there is much hope about Jen Brea’s upcoming film, Julie Rehmeyer’s soon-to-be-released book Through The Shadowlands, the current research into Rutuximab, the recent American study on the disease burden of ME and how much should be being spent on research, and various studies on how the way we produce energy is faulty.  But while all these might seem new to most people they’re old hat to me.

I got excited in 1996 when Hilary Johnson wrote an expose book called Osler’s Web.  We in the UK got very excited in the late 1990s when one of our most well known TV personality’s daughters contracted very severe M.E. and her Mum did an entire hour long documentary on the disease on TV.  I got excited in 2003 when a study suggested M.E. costs the UK a staggering £2.2 billion and our Government allocated £8.5 million to set up specialist clinics around the country (from which funding has since largely been pulled and which, in any event, were bloody useless as they focused almost exclusively on CBT and mindfulness with no help for the actual disease in any way and very few outreach resources for the severely affected).  I got excited in 2011 about the release of the book (in which I took part) and subsequent film Voices From The Shadows about life with severe M.E.  And I’ve lost count of the research studies about which I’ve been excited over the years, nearly every one of which claimed to have finally found the cause of the disease.

Here is, IMHO, the hard truth about M.E.: until a cause for the disease is found, and a test to prove whether someone has M.E. or not is developed, nothing will change.  And we are sadly nowhere near to discovering either.  Nowhere near.

For over a decade the research focus was on a single virus or bacteria being the cause of M.E. – Epstein Barr, Herpes, Enteroviruses, XMRV.  I never understood the logic.  While most cases of M.E. start with a viral infection, the virus is different for all of us – mine started with a tummy bug, yours might have started with the flu, Slap Cheek caught off your child, or any number of other infections.  It may not have started with a viral infection at all – some cases of M.E. start following surgery, or a car accident, or after a vaccination.  The only common factor is immune system activation.

Now the focus is firmly on energy, which is another blind alley.  When we get the Flu, or Glandular Fever, our energy levels are next to zero and just walking to the loo or digesting a bowl of soup is all we can manage for weeks, sometimes months.  But there’s nothing fundamentally wrong with the way our body produces energy.  This lack of oomph is part of our immune response.  If I over-do it, either mentally or physically, my throat gets sore, I feel fluey and I overheat.  This has nothing to do with energy per se or the lack thereof, it has to do with my faulty immune system.  So all this research on hibernating animals, or inability to convert glucose into energy, doesn’t in any way explain my symptoms.  This is what happens when CFS is mixed up with M.E.

The roots of M.E. seem so blatantly obvious to me I have no idea why researchers continue down these dead ends instead of looking at the immune system as a whole.  Instead of looking at mast cell activation dare I say it, or some other event which affects our entire immune system.  Researchers would do better to study patients with the flu than patients with CFS.

It may sound like I’m jaded over the whole M.E. thing and in many ways I am, but I don’t mean to sound negative.  I am absolutely 100% convinced that a cause for M.E. will be found and while a cure may not be found (we still can’t cure the common cold remember!) at least we may discover drugs which alleviate symptoms and lead to increased quality of life.  I sadly just don’t think it will happen any time soon.


It’s not fatigue!

I know I said my next blog post would be on food, but after reading some research published today on Chronic Fatigue Syndrome the food post will have to wait.

I saw an exciting headline which said “ME is real.  Scientists have discovered specific blood chemicals in CFS patients which are similar to those seen in hibernating animals.”  Big sigh.  In fact, huge sigh.  Since when did hibernating animals feel ill?  Maybe this is just the Daily Mail’s take on the research, but if so it’s replicated by the broadsheets, eg The Telegraph.

The cardinal feature of M.E. is post exertional malaise (PEM), ie feeling ill and fluey after exertion, either mental or physical – very trivial exertion like cleaning your teeth.  When did this number no.1 diagnostic criteria disappear?  When did the no.1 diagnostic criteria become chronic fatigue, which btw is a symptom not a disease and common to many illnesses, eg. depression, cancers, hormone disorders, heart disease, Ehlers-Danlos Syndrome to name but a few.

When did symptoms of immune activation, like sore throats and tender lymph glands, disappear from the diagnostic criteria?  When did central nervous system symptoms like dysautonomia disappear from the diagnostic criteria?  Why does no-one ever talk about paralysis, or a-typical seizures or new onset dyslexia?  Or horrendous muscle twitching, peripheral neuropathy, speech problems, light, sound and touch sensitivity?  Or drug intolerance (or in my case complete allergy) and alcohol intolerance?  When did the number one symptom for ME become persistent fatigue and nothing else?

What happened to starting ME with a virus or vaccination (ie an immune event) which you simply never get over?  What happened to having to rule out primary mental health issues like depression and anxiety before a diagnosis of ME can be made?

This is what happens when you call Myalgic Encephalomyelitis Chronic Fatigue Syndrome.  This is what happens when you water down the diagnostic criteria and include just about anyone with chronic fatigue as a symptom.  You end up with the focus on fatigue and nothing else.

I was told by doctors that I was so ill I might not make it through the night.  Twice.  You don’t die from “fatigue”.  You are not bedridden, have seizures or become paralysed by “fatigue”.  You do not lose your speech or your mental faculties because you are persistently tired.  I was not in “hibernation” for 10 years.  I was near death for 10 years, every second of every minute of every day.  And FWIW I couldn’t sleep a bloody wink.

I haven’t read the actual research paper as I don’t have the brain power.  I read on the ME Association’s Facebook page, however, that it’s very exciting research and could be potentially important.  But the newspapers still focus on the F word and, let’s face it, the public are going to read the newspaper reports not the actual research.  And they’re going to take away from it that we are all cute little hedgehogs, sleeping our days away!  I wish.

When am I going to read a newspaper report that tells ME like it really is?  That doesn’t even mention depression.  That doesn’t drag up the ‘Yuppie Flu’ reference?  That doesn’t tell me changing my diet, joining a gym or taking an expensive supplement will cure me?  Because when that day comes I’ll celebrate and not until.



There are none so blind..

…as those who don’t wish to see.

Y’know as a kid when you didn’t want to hear something you’d stick your fingers in your ears and go “la la la la, can’t hear you!”  I’m starting to think that’s the way most people feel about histamine.  They only hear the bits they want to hear and ignore everything else.

To me, the most important page on my entire blog is the one about the evidence of Histamine in foods, yet it receives the least visitors and has no comments.  Not a single one.   The article proves that there is basically zero evidence on which to base any of the current Low Histamine Food lists and that the histamine content in food is just a guess, and oftentimes not even an educated guess.  It’s very important to know this, particularly if you have HIT and could go into anaphylaxis if you eat too much histamine-rich food.  But it seems no-one cares.  No-one is shocked at the lack of evidence for histamine in food.  And that shocks me more than anything!

In comparison, The Low Histamine Food list page has the most traffic, even though I’ve proven it’s not based on fact or much of anything else.  It seems no-one’s bothered how accurate, or not, the low histamine food lists online are despite the fact their lives could depend on it.

We see what we want to see, especially when we’re desperate.  We see a list of research references at the end of an article and think to ourselves “oh well, it must be based on fact then”, even though we don’t bother to read the research references to find out how old they are, how big the study was, if it was replicated, if it appeared in a peer review journal and was scrutinized.  In other words, whether the research the article is based on is just a theory or whether it’s fact.

All the low histamine diets online tell you should avoid egg white.  Did you know this is based on one single miniscule study done in the 1950s on mice which was never published or scrutinized?   Would you let someone operate on your heart, based on a single research study on mice done just after the Second World War?  No, I thought not.

No food is innately high in histamine.  Histamine is produced during the aging process (eg mature cheese), the production process (eg. yoghurt, vinegar) or during storage and transportation.  The latter is very important.  A banana straight off the tree will be zero histamine.  A month old, brown, soggy banana will be high histamine.  Our food storage and transportation has come on leaps and bounds in the last 60 years.  We now use refridgerated lorries and food often appears in supermarkets within days of being picked or produced which impacts its histamine level.

I wish if nothing else people would take away from my blog the fact that there is no such thing as a Low Histamine Food list.  They don’t exist.  It’s pointless Googling for whether or not Pak Choi is low or high in histamine, cos no-one knows.  No-one knows whether the blackberries I pick off the bush in my garden contain histamine, or are higher in histamine than the blackberries shipped in from Israel for sale in the supermarket.

No-one knows how food affects DAO in the gut.  We can’t even accurately measure DAO in the gut, so how on earth would we know if any food increases or decreases it?  No-one knows if particular foods (eg. lemons) releases histamine stored in mast cells.  And if you read differently online the person or company saying otherwise is either lying, guessing or simply hasn’t done their homework properly.

I know what I’m saying is deeply unpopular.  I know sick people don’t want to hear it.  But we should all know the facts about this stuff.  It’s important.  People following low histamine diets are cutting out all sorts of foods for absolutely no good reason.  Aren’t our lives hard enough without that?  If you don’t believe my research, do your own.  Try and find evidence for the histamine content in foods – real evidence.  Properly conducted up-to-date research published in medical or food Journals.  And you’ll find it’s virtually non-existent.  Just because there’s an app listing foods high in histamine doesn’t mean it’s accurate for heaven’s sake!  And any app which lists foods which liberate histamine from mast cells, or which increases or decreases DAO is wrong, wrong wrong!  Ask the people who produce the app to provide you with the evidence on which they base their information.

Knowing all this, I’ve been re-introducing some foods back into my life which I’ve avoided for the past 3 years.  There is no evidence for baker’s yeast being high in histamine, and I really miss proper bread especially when I’m out and about, so I’ve been eating it in small amounts for a few months now.  I still have my yeast-free bread when at home because I like it, it’s organic and doesn’t contain any of the crap of supermarket bread, however it’s only nice toasted so when out of the house I eat ‘normal’ bread in cafes and for my sanis.  I’m happy to report no effects on my symptoms whatsoever.  None.  Yayyy 🙂

I’ve also re-introduced milk chocolate.  I’m careful to use brands without soya of any kind (one of the only foods for which there is proper evidence of high histamine content) and am again happy to report that it has not affected me one iota.  My hormones are ever so grateful – having a menstrual period without chocolate was sheer hell 😉

There is not a shred of evidence for the histamine content of fruit or how fruit affects histamine in the body.  Not lemons, not oranges, not strawberries.  No research has been done on it.  So over the summer I intend to try various fruits I’ve been avoiding, one by one, and see how it goes.  Bananas are not purported to be high in histamine, yet they make me brain fogged, so it may be I react badly to some fruits for reasons no-one understands and which has nothing to do with histamine.  Or bananas may be high in histamine.  No-one knows, as they’ve not been tested!

Please, think about what you read online.  Just because 100 people are saying one thing, and 1 person is saying the opposite, doesn’t mean the 1 person is wrong.  Do your homework.  Look at the evidence and make informed choices.

Which List Should I Use?

In light of my recently gathered information, or lack thereof, on which foods affect histamine I suppose many of you are wondering which low histamine food list to use, if any.  I have no idea is the simple answer.  I don’t give advice here on my blog because I’m in no position to – I’m just a sick girl floundering around in the dark along with the rest of you.

There is information on the most popular low histamine food lists on Alison Vickery’s website so thanks to her for putting that information together which saves me a massive job 🙂  We’ll have to agree to disagree though that any of the lists are “credible”.

I follow Dr Joneja’s list (which is the one here on my website) because it helps control some of my Histamine Intolerance symptoms some of the time.  I also have Mast Cell Disease though and the diet doesn’t help that.  There is no source data for Dr Joneja’s list, however, so I have no clue on what she bases the information or how accurate it is.

Another popular List is by SIGHI, the Swiss interest Group on Histamine Intolerance.  This List is compiled from “various sources” none of which are given, so again there is no way of knowing what information the food choices are based on or how accurate the testing of these foods was.  The List also incorporates “the experience of members” which is largely irrelevant.  I have no idea whether SIGHI’s members have HIT, MCAD or any number of other diseases, what medication they are on which could affect the foods they eat or whether they’ve been tested for actual food allergies.  One thing I’ve learned from writing my blog is that we all have vastly different reactions to foods: I tolerate wheat, you may not.  I tolerate legumes, you may not.  Apples are low in histamine and they make my lips tingle, because I have an allergy to Birch pollen and apples are related.  Whether or not you react to a particular food could be due to several factors and have absolutely nothing to do with the food’s histamine content.  The reason we have double-blind randomized controlled research trials is to eliminate all these biases and only compare ‘like for like’ results.

Another List mentioned on Alison’s page is the Failsafe Diet from the Royal Prince Alfred Hospital.  You have to buy this list so I don’t have a copy – if anyone else has a copy please let me know if the testing methods on which they base their list is included.

Low Histamine Food Apps don’t appear to be available on the Windows platform, which is the type of mobile phone I have, and you have to buy them, so based on that I don’t have access to them.  At least one of the Apps apparently lists the research sources for their information, so kudos to the company for that.  However, has anyone actually read the research?  How old is it?  How many studies is it based on? Is it just a regurgitation of the research I found online, because if it is it’s next to useless.  Any App which lists food that “liberate histamine” or “block DAO” are useless IMHO, because I found that absolutely no research has been carried out in either of these two areas.

I must sound like I’m totally anti low-histamine food lists which isn’t true.  Dr Joneja’s list literally saved my life.  I was eating huge amounts of hard cheese like Cheddar & Parmesan, which research shows is high in histamine.  Being vegetarian I was also eating loads of spinach and aubergines which research shows are moderate in histamine, and fermented soy products like soy sauce which research shows is high in histamine.  And like everyone else I bought all my sauces, mayo etc.  which contain massive amounts of malted vinegar and soya products as preservatives.  Replacing all these items helped my symptoms enormously.

I have no idea if the orange juice I drank every day contributed to my histamine problems, because I couldn’t find any research which has tested citrus fruits – huge shock there, as they are demonized in the low histamine food world.  Ditto for tomatoes and strawberries – no evidence there either because no-one has actually tested them that I could find.

I’ve found that bananas, buckwheat and cashew nuts make my brain fog worse, and apples make my mouth tingly, despite none of these foods being touted as high in histamine (I don’t know if they are or not as I could find no research on them –  I just know my mast cells obviously don’t like them much).  As I said earlier, we’re all going to have things our mast cells react to which are individual to us and nothing to do with the food’s histamine content.

I regularly eat chocolate biscuits and they give me no symptoms whatsoever.  I could find no research which had tested cocoa for its histamine content.  Just because something is “fermented” I discovered it doesn’t automatically make it high in histamine.  One study found Kefir, a fermented milk drink, to be very low in histamine, along with yoghurt another fermented product!

To be honest, I’d hoped that by delving in to the murky world of histamine in food I’d come out the other side much more informed on what I should, and should not, be eating but I’m actually more confused than ever.  As a result of my research though I am going to try re-introducing foods one at a time which I haven’t eaten in nearly 3 years and just see what happens.  The more varied and balanced a diet is the better it is for you and the more fun it is to eat!

The Truth About Histamine in Foods

As regular readers know, for several weeks (it feels like forever!) I’ve been trying to work out the accuracy of the Low Histamine Food Lists found online.  What I discovered was really shocking.  The fact is, there is virtually no reliable data on which to base any kind of Amine-related food list and it appears that most lists are based on hunches, speculation or research so old the authors are dead.  It may turn out that these hunches are absolutely accurate: nutmeg really is high in histamine and so are pumpkins.  Or it might turn out that we’ve all been avoiding these foods for absolutely no good reason.

The whole subject of histamine is really quite complex.  What started out as a single article turned into an entirely new section of my blog called ‘Low Histamine Food Info’ which contains several new pages – just hover over the tab in the menu and you will see the pages listed.

If you’re feeling lazy and want direct links to the new pages here you go:

Please Read This First!

What is Histamine?

Diet & Histamine Intolerance

Diet & Mast Cell Disease

Histamine & Food: The Evidence

Histamine & Drugs (which is still being written, bear with me I’ll let you know when it’s available)

These pages are then followed by the existing Low Histamine Food List and Low Histamine Shopping List pages which remain largely unchanged.

I stress that the information in this new section isn’t exhaustive – there are a couple of companies which test for amines in food which I don’t have access to (although I question their accuracy) so I’ve only looked at free research which can be found online.  It is also only a personal interpretation of the data and I don’t claim to be any kind of expert at deciphering statistical analysis.  I’m just a sick girl, lying in my bed going round in circles trying to work out what any of this stuff means 😉

So, my friends, knock yourself out and have a read.  I’ll be interested to hear what you think and if you can add anything to the information please do let me know.

There’s a shock in store!

Happy new year everyone – I hope you’ve managed to have a crisis-free holiday and that Santa was good to you 🙂

This is just a short post to say I know I’m being quiet but that’s because I’m working on the Histamine pages I talked about before Christmas.  It’s actually a really complicated area and is taking much, much longer than I’d anticipated consequently I might be quiet for another week or so while I sort all the information out – bear with me.

What I’ve discovered so far has shocked me to the core.  The lack of actual evidence for histamine in foods, let alone histamine liberators or DAO blockers is staggering.  I have absolutely no clue what most people base their dietary advice on :-/  Actually, that isn’t true – it seems to be chinese whispers.  One website or person makes a statement, which is picked up by the entire rest of the world who doesn’t bother to question where the information has come from.  Occasionally I’ve found websites or papers which do quote research references but when I’ve read the citations they turn out to be over a decade old and only carried out by 1 research team and even then not in any kind of randomized double-blind controlled way, or they’ve been carried out on rats or in a test tube which often bears little resemblance to the reality of human beings.

There appear to be only 3 companies world-wide who actually have databases of the histamine content of some foods, but the information is only available to Government bodies, those working in the health or food industry, or when used for commercial purposes like producing an app.  I certainly don’t have access to them and have no idea how accurate they are.

So my friends, prepare to be even more baffled than you already are about what you should, or should not, be eating and why!