Chronic Fatigue Syndrome and the Scandal of Medical Ignorance

Hi everyone,

My first thread on ATS and after a 9 month illness which has left me housebound and a battery of tests I was formally diagnosed with Chronic Fatigue Syndrome (CFS) yesterday. There is no test for chronic fatigue syndrome and diagnosis is one of exclusion of other illnesses. Like many sufferers I had to change GP due to being confronted with an unsympathetic attitude and "there is nothing wrong with you". When I suggested CFS to my first GP she told me that it is not a diagnosis, just a label when doctors cannot find anything wrong with you.

Well hey ho I am now 9 months into this terrible illness and I have gone from being a senior nurse in intensive care working 4 to 5 12 hour shifts a week to being an invalid using a walking stick on a very limited energy budget. I can walk 50m on a good day before the classic post-exertional malaise sets in which can only be described as having a hangover on top of full blown flu which can put you in bed for days.

The WHO class CFS as neurological disease although in Europe many psychiatrists consider it a mental illness. The National Institute of Clinical Excellence (NICE) provide guidelines for all medical staff in the UK. The NICE guidelines for CSF are CBT and graded exercise therapy (GET). Several studies have shown CBT to be ineffective with many CSF sufferers and GET has been shown to be detrimental in moderate to severe cases. There is a move to adopt the Canadian Guidelines Link

Due to changes in the way sickness and invalidity benefits are given many sufferers of CFS are failing the mandatory Work Capability Assessment undertaken by ATOS. They use a point based system which is flawed in the sense that it does not take into consideration the severe fluctuating nature of CFS. Yes i can walk 50m on a good day and then i need to rest. I can carry a pint bottle at waist height but that doesn't mean I can do this repeatedly without suffering post exertional malaise.

I am fortunate as I saw an endocrinologist privately who specialises in fatigue disorders. Many CFS sufferers don't get access to these specialists as they are not employed in all health authorities and they cannot afford to pay to see specialists privately. This means they have to rely on GP letters which are becoming quite difficult to get with many practices now refusing to provide reports for sickness benefits (ESA). Without medical evidence big numbers of CFS sufferers are being assessed as fit for work. Many do try to return to work and have relapses. Relapses can be unpredictable and many sufferers fail to gain the level of functioning they had prior to the relapse.

A member of a chronic fatigue forum I use came across an interesting article in Reuters which is quite thought provoking and I thought I would share this here. Link.

I would be interested in making contact with any members with chronic fatigue syndrome on ATS.

Earthblaze

I can relate I have been like this since 1981, been a lot worse lately.

a reply to: earthblaze

What has been the course of action? Have you had a micronutrient test? What about genetics testing? Any underlying cause found?

I have participated in these topics before, and learned some interesting things, here is something new.

Chronic Fatigue Syndrome Identified by Brain Inflammation Markers
Read more at guardianlv.com...

Brain imaging reveals clues about chronic fatigue syndrome
news.emory.edu...

Doctors have long suspected brain inflammation as a potential cause, but no definite traces of it had been detected. New research, in the June issue of the Journal of Nuclear Medicine, shows for the first time distinct increases in inflammation in particular regions of CFS patients' brains.

www.scientificamerican.com...

www.deseretnews.com...

I have suffered from Fibromyalgia since my early 20's.....was in my late 40's before a definite diagnosis via specialist.
Being so sick, and being told there is noting wrong is very hard to bare.
I had always felt that there was a mental element to this illness, as times of high or prolonged stress would bring on a full-blown episode that would take months to recoup from. It feels like my body is poisoning itself.

I have M.S., and chronic fatigue is the main symptom I suffer through during relapse periods. It's maddening. There is nothing more frustrating than to roll out of bed in the morning, only to be completely exhausted after an hour or two.

Granted, my chronic fatigue is a symptom of a bigger issue, but it works in the same insidious manner.

Unfortunately, I have no great advice to give on coping with the disorder... when it hits me I "nest"; I build a spot on the sofa with my heating pad, pillows and a blanket. I become like Sheldon Cooper. It's my spot... beyond that, I avoid foods with processed sugars and keep my caffeine intake to a minimum... those seem to exacerbate the issue...

a reply to: an0nThinker

I was this high energy athletic person until it hit me, it started with the fatigue, heart palpitations, vertigo, panic attacks, now I have Fibromyalgia and joint pain, and the brain fog is excruciating, the older I get with this on top of age is a nightmare.

I can see the possibility of the brain inflammation

a reply to: madmac5150

only to be completely exhausted after an hour or two.

Me too, I need a nap after I get up, then usually I feel a little better, ever notice that afternoons seem better than mornings, again is this the brain inflammation?

a reply to: earthblaze

Thyroid dysfunction cases this symptom as does impaired gut flora from eating "Roundup ready" GMO food. You didn't mention diet, but most things can at least be mitigated with metabolic modification.

Except things like MS. That is a scary one and hard to eliminate during diagnosis.

Inflammation isn't a cause, it's a symptom of something else.

Be well.

originally posted by: Stormdancer777
a reply to: madmac5150

only to be completely exhausted after an hour or two.

Me too, I need a nap after I get up, then usually I feel a little better, ever notice that afternoons seem better than mornings, again is this the brain inflammation?

You know, I really have no idea. I have undergone many MRIs, CAT scans etc. and the doctors never mentioned any inflammation... just the de-myelenating lesions. That, in a nutshell, is M.S. I haven't really done much research on CFS as a stand alone disorder since my diagnosis; I have focused on the M.S. (understandable, methinks).

I do recall a connection being made between CFS and the Epstein-Barr virus... but that was more than a few years ago...

a reply to: Stormdancer777

Here is a micro nutrient panel. This will tell you if you have any nutritional deficiencies.
www.spectracell.com...
Also
www.23andme.com...
You can use the raw data and understand if you have any genetic problems. (FDA blocked their diagnosis tools). Check for especially methylation and detox analysis.
livewello.com...
www.isogg.org...
geneticgenie.org...
This isn't medical advice.

5 Diet Changes That Helped Me Overcome Chronic Fatigue Syndrome

I really need to look into this

www.mindbodygreen.com...

Gut inflammation in chronic fatigue syndrome
www.nutritionandmetabolism.com...

seems like just overall inflammation,

chronicfatigue.about.com...

14 Foods That Fight Inflammation
www.health.com...

There is a forum member that is good at nutritional advice I will see if he will come post

It's an ailment of many origins. Essentially there are too many pathogens weakening the bodies system, and the end result is a lack of energy necessary for proper mitochondrial function.

Dr Garth Nicolson has blown the cover on this affliction, but the medical response has been to look the other way. The reasoning is fairly straight forward, the diagnosis requires testing that is expensive, and there is no one pathogen to be looking for.

It's very much like the markets, in that there are hidden pathogenic forces at play, and few are talking out against it. People are focusing on symptoms after the fact, and using the public's ignorance against their own good, ie greed is the main play at hand.

Ref:

Fatigue Illness Research

Mycoplasma Bacteria Tied to Chronic Illness

Multiple Co-Infections





Makes sense you're a nurse working with geriatrics and caught this. Plenty of nasties floating around hospitals and especially amongst the elderly. I've got a friend who started working geriatrics a few years ago, now sleeps about 16hrs a day. Go figure.

a reply to: an0nThinker

thank you, thinker, since I don't go to the doctor and usually look for alternative methods

Try taking a multimineral pill. make sure it contains at least a hundred percent of the RDA of molybdenem, and Selenium. It should contain about fifty percent of the RDA of copper, zinc, and iodine also. Don't like pills, just eat some real oatmeal once a week and cream of wheat once a week.

Eat a little more sulfur foods too, the amount can be higher if the molybdenum is higher. enzymes reliant on molybdenum help to process the sulfur foods. Eggs and onions are a good source.

Make sure you are getting adequate salt....by that I mean sea salt, which has a higher percentage of Chloride compared to table salt. Try making homemade chicken soup about once every two weeks, it needs onions, cabbage, and a few drops of tabasco, this will help to supply NAC which helps to protect the cells and the body can break down NAC to produce taurine. Taurine and NAC can also be acquired from rare meats and supplements if you can't make a homemade soup. But supplements aren't as good as food and you have to eat anyway so there is no real added cost. A big pot of chicken soup costs about ten bucks and will feed four or five people.

Now the molybdenum can help with depression if copper levels are too high. Copper is necessary in our bodies but excessive levels are no good. If copper gets too low, you start to notice that bread bothers you a little.

If you take a multivitamin/multimineral pill make sure it contains molybdenum, it it doesn't it can cause a problem with oxygen utilization in the body because the other things being boosted can cause a shortage of molybdenum.

These are just suggestions, don't overdo any minerals or vitamins because they can cause imbalances to form. Boosting niacin can cause a depletion of some minerals and B12. You can take a megapill of niacin or B12 to jumpstart your system if you are locked out but then return back to normal.

Mega niacin can cause some problem if foods containing lucine, isolucine, and valine are not consumed at the same time, so eat some pork and beans or corn with it. BBQ chicken goes good with corn on the cob. Use corn chips if eating hot Salsa. Hot salsa is just like mega niacine pills, it makes your forehead hot and sometimes it sweats.

Now I got off topic again, the first paragraphs are what I would suggest to try. The multimineral pill I take gets me up and moving.

a reply to: madmac5150

I do recall a connection being made between CFS and the Epstein-Barr virus...


Me too and also a connection with people that had mono

a reply to: rickymouse


There you are ricky I was just talking about you.

a reply to: Stormdancer777

These tests will help you rule out problems that the medical community will overlook. There simply isn't much money in telling you that your body stopped processing b12(for example). At the very least they will rule out any nutritional and genetic problems(which in my opinion is the root of a lot of undiagnosed problems). Good luck.

a reply to: rickymouse


do you have a theory on what causes it?

a reply to: earthblaze

When I first began to read your thread, I felt I could relate. Then you began to describe your symptoms, and mine are dwarfed in comparison.

I too went through a battery of tests, because ontop of the fatigue my lymph glands also swelled up like balloons under my jaw. This got me a bone marrow biopsy and a lymphoma scare, but after everything all they could pinpoint was: Epstein Barr Virus.

It took them a year and a half for me to even get that diagnosis, and it has been two years since then. So I feel you, having lost the first 4 years of my '20s to this uncommon illness... I can only be grateful that my issues with fatigue are nothing in comparison to yours.
For that you have my condolences.