Salicylate intolerance, oedema and headaches in ME CFIDS.

Another chapter in the story of food intolerance linked with the progression of my ME CFIDS has been unfolding in the last few years. I think it is important to blog this in memory of Annabel Senior and her struggle with ME related food intolerance which eventually became so severe it contributed to an early death.

She reached a point where she could not eat anything at all without adverse reactions. Her coroner's report was among the first in the UK to attribute CFS as a cause of death. The following quote is from the National CFIDS Foundation patient memorial.

Annabel Senior, aged 60, died on January 8th after 45 years of CFIDS/ME. Toward the end, she was unable to eat anything due to multiple abreactions. She lasted for nearly 53 days without food, and only gave up water toward the end, because she was too weak to swallow. Annabel was 15 when she became sick and died at age 60. The coroner’s report said, “”Death due to Chronic Fatigue Syndrome…1a. Left ventricular failure, 1b. Occlusive coronary artery atheroma.” She leaves her constant caregiver and husband, Richard. Annabel lived in Conway Valley, North Wales in the United Kingdom.

+URL to a short article entitled Did food intolerance kill Annabel Senior? FYI

Not all PWME become so severely ill in this way but food intolerance is a difficulty for some. I am hoping this is a situation which can be helped by knowledge about foods. So far I have found it best to avoid nightshade vegetables, high amine foods, MAOi foods, dairy and soya and have recently added another to the list, high salicylate foods.

It first began to manifest about five years ago when I began to get a summer cold every year, with very blocked and swollen nose qualifying as nasal polyps.

To put this in context I have had problems with my immune system in summer ever since 1986 immediately after ME CFIDS onset when I started to get chronic recurring virus  accompanied by severe allergic asthma and hayfever every June - July period and an NHS type allergy challenge test later confirmed a grass pollen allergy a decade after ME diagnosis. I had previously been tested in my youth due to chronic asthma which was found to be related to house dust mite allergy, not pollen allergy. I had grown out of the house mite allergy with the help of a lot of rowing, which was a sport which did not bring on attacks, so I was able to get fit and strong and rowed for my school and college. Somehow the allergy returned and shifted to pollen at the onset of ME in 1986 when I was aged 21-22.

As part of this ME CFIDS problem in summer I also experienced a tendency towards developing pus filled cysts and strep type bacterial infections during that summer period of raised allergy. Clearly something strange was happening to my immune system in the summer months. I say this for posterity because even today I have no idea what it is other than it fits the bill for Dr Paul Cheney's observations of ME CFIDS related TH2 shift symptoms.

To add to the summer difficulties over the last five years or so I began to experience a late summer cold every July - August. I discovered by accident that hot honey and lime was a very bad idea as a cold remedy in my case as it made my nose swell up like a balloon (the lime also made my skin feel like it was sunburned when it wasn't, but that is another story). After reading around the internet I realised that honey has a very high salicylate content and that salicylates can cause this kind of oedema reaction and after a few exploratory tests satisfied myself this was a real issue.

I also discovered that loratidine antihistamine can cause upper respiratory tract infection as a side effect. I had been taking it to help with my hayfever but suspect it may have contributed to the yearly summer cold.

Three years ago I started to get a series of headaches. I consulted my food diary and could not believe what I was seeing. I was eating lots of healthy green vegetables like broccoli and peas and lettuce and kale. To my dismay it was these very green and healthy vegetables which were causing the headaches. I soon discovered that these vegetables have high salicylate content and when I switched to low salicylate vegetables, of which there are many, the headaches reduced markedly.

So I am writing this as a simple heads up to say, salicylates can also be a problem with this condition. FYI there is a useful online website detailing salicylate levels in different foods at salicylatesensitivity.com.

[EDIT 27/5/23 I have since come to consider that this problem with green vegetables may have been due to high levels of vitamin K in green veg as VitK is involved in blood clotting. Please see subsequent blogs for updates.]

I have written this in the hope that PWME who have food intolerance might read this and benefit from my experiences learning to identify the types of food which can cause a problem.