Hi, I've been diagnosed with CFS.

Symptoms I personally have
1. Brain Fog
2. Extreme Fatigue
3. Sleep Doesn't help no matter 4 hrs or 12
4. Inability to Concentrate - sometimes feels like ADD
5. Headaches

Now, to be quite frank, I am absoluted frustrated and baffled by this Chronic Fatigue Syndrome that so many people have. Now reading over these boards I'm not sure if a lot of people actually have this or are just tired a lot and call it CFS, but regardless I'd like for some real answers.

Does anyone know of any reasearch being done on the disease, any doctors that are attempting to treat it anywhere, or basically any other information that is being gathered in survey's ect. regarding this syndrome.


I think it's important that we start trying to battle this issue rather than debating whether or not we have it, which is all this board seems to be right now. Any advice/input would be welcomed.

CFS is NOT about just being tired. If one does not also feel ill (a fluey feeling) during "flares" then what they have probably is not CFS. CFS involves every organ system, so most people have many more problems than you list here, which is fortunate for you.

The reason people debate about what they may have, especially in the beginning stages of the illness, is because there has not been a lot of research done on the illness, so they are left in a quandry. This is a good place to come and express one's frustration and receive support as one of the worst things about this illness is the lack of understanding among many health professionals, not to mention one's friends and family! This can lead to depression, which in turn compounds the effects of CFS.

If you want to do some research, there are many good books and articles out there. You could also visit the CFIDS Foundation home page by doing a search on the Internet.

All the best

Hi, I've been diagnosed with CFS.

Symptoms I personally have
1. Brain Fog
2. Extreme Fatigue
3. Sleep Doesn't help no matter 4 hrs or 12
4. Inability to Concentrate - sometimes feels like ADD
5. Headaches

Now, to be quite frank, I am absoluted frustrated and baffled by this Chronic Fatigue Syndrome that so many people have. Now reading over these boards I'm not sure if a lot of people actually have this or are just tired a lot and call it CFS, but regardless I'd like for some real answers.

Does anyone know of any reasearch being done on the disease, any doctors that are attempting to treat it anywhere, or basically any other information that is being gathered in survey's ect. regarding this syndrome.


I think it's important that we start trying to battle this issue rather than debating whether or not we have it, which is all this board seems to be right now. Any advice/input would be welcomed.

Hmm... To start with, I'm sure if you have CFS you will have noticed that the word "tired" doesn't even come close to the extreme exhaustion you feel on a daily basis and after doing the smallest of physical tasks.

I agree with the frustration you feel with CFS. I'm not sure there's been much research into CFS apart from the psychological aspects - psychiatric referral, cognitive behaviour therapy, graded exercise and antidepressants.

However, from what I have read of people's experiences of CFS and research articles from the BMA etc., I can say the following:

I believe that "CFS" is a blanket term given to anyone displaying symptoms of a general nature where test results are all negative. I think that in its broadest sense "CFS" (rather than ME) is actually several different illnesses, which doctors cannot yet identify. Certainly sufferers don't always report the same symptoms - the only common denominator is the persistent fatigue.

There are people with "CFS" who suffer from psychological problems, e.g. depression, bi-polar disorder; those who suffer from joint aches and pains; those who have night sweats, fever and heat intolerance; those who are constantly cold; those who have constant infections, swollen glands and sore throats... (the list goes on).

I don't believe that everyone with "CFS" is suffering from the same illness. I'm pretty sure that not all the major organs of my body are affected. I wouldn't say I feel "fluey" - how I feel is a combination of running a marathon, sitting in a car for 8 hours and not having had a good night's sleep for months... but I haven't run a marathon, I haven't sat in a car for 8 hours and every night I get a good 10 hours sleep. My symptoms are basically: severe fatigue, cold intolerance, cold hands/feet, achy joints and disrupted nail growth.

Having had such bad experiences with doctors since being diagnosed with "CFS", I pity anyone being diagnosed with it. To me it means no medical treatment, unless you'd like to stuff yourself full of sleeping pills and antidepressants; it means a doctor sitting in their chair shrugging their shoulders and saying 'I can't do anything for you'; it means a consultant saying 'think positively and it'll all go away'.

Yes, research HAS to be done, it really does. The medical profession have to look away from the psychological approach to one that's more balanced between mind and body. I hope in the future that when someone turns up at a doctor's surgery that the first thing they're offered isn't antidepressants.

My symptoms are basically: severe fatigue, cold intolerance, cold hands/feet, achy joints and disrupted nail growth.


Kiya,

Have you had your thyroid checked? Your symptoms sound more akin to hypothyroidism.

Just a suggestion.

Thanks peregrine. Yes, I have - my results were high-normal. I agree though, my symptoms are pretty hypothyroid (even my podiatrist suggested my thyroid could be playing up when he saw what was happening to my nails). Even my cholesterol is slightly raised. I just don't know. I'm seeing another general physician in a couple of weeks - perhaps they'll recheck my thyroid function. I have family members with hypo and it took doctors ages to diagnose because all the results were normal for a long time before they moved out of range.

Undiagnosed illnesses are definately the worst.

Thanks peregrine. Yes, I have - my results were high-normal. I agree though, my symptoms are pretty hypothyroid (even my podiatrist suggested my thyroid could be playing up when he saw what was happening to my nails). Even my cholesterol is slightly raised. I just don't know. I'm seeing another general physician in a couple of weeks - perhaps they'll recheck my thyroid function. I have family members with hypo and it took doctors ages to diagnose because all the results were normal for a long time before they moved out of range.Undiagnosed illnesses are definately the worst.

I would strongly recommend you check out the Thyroid board here. There are some very knowledable people who hang out there and can interpret blood panels for thyroid more accurately, it would seem, than most doctors. I have both Hashimotos/hypothyroid and CFS, but all my cold body part symptoms disappeared after my thyroid levels were adjusted.

HI

I have been taking T3 for my CFS, as a doctor I saw thinks this is the problem. I do not believe that this is the sole problem though. Kenny de Meirleir has a medical hypothesis paper out suggesting that in CFS the thyroid receptors are blocked (cant remember the explanation why offhand) and this explains why a lot of CFS folks are clinically hypothyroid with euthyroid results.

Do any of you get off-balance symptoms and symptoms of feeling a bit strange in the head as well as the fatigue?

Martin

Its very interesting that many doctors are now starting to treat people with CFS symptoms as if they have a clinical hypothyroid diagnosis. Blood tests often do show normal and yet the symptoms are all there: low body temp, cold extremities, cold intolerance, difficulty waking up in the morning, depression, fatigue. I makes you wonder how this could happen. Maybe many people that beleive they have CFS really have undiagnosed thyroid abnormality...not necessarily in production of thyroid hormones but in properly utilizing them...who knows.

The MAIN point I always emphasize is that none of your symptoms are occurring in a vacuum! If you can rule out a psychological disorder as the cause of your problem, there MUST be something physically wrong with you going on. The mechanism of this illness is embedded somewhere in our bodies...sooner or later this will be discovered. My theory has always refered to a faulty feedback loop between the immune system and the nervous system. If you think about it, all the symptoms seem very flu-like...as if your immune system is stuck fighting something that isn't there anymore and depleting your resources in the process. Somewhere the regulatory mechanisms have been disrupted and the cycle continues until it reregulates itself. Many people eventually become symptom free so that means that it doesn't have to be a permanent condition...Sooner or later we are gonna nail this thing!

By the way, Kenny de Meirleir, world-renowned clinician Professor from Belgium stated that "the pathology of the disease is not a mystery anymore....The Americans have now worked out the entire genome of CFS. Unsurprisingly, all the genes are related to the immune system. We can say for certain that CFS is an immune disorder."

We shall see what all this means one day.

Its very interesting that many doctors are now starting to treat people with CFS symptoms as if they have a clinical hypothyroid diagnosis. Blood tests often do show normal and yet the symptoms are all there: low body temp, cold extremities, cold intolerance, difficulty waking up in the morning, depression, fatigue. I makes you wonder how this could happen. Maybe many people that beleive they have CFS really have undiagnosed thyroid abnormality...not necessarily in production of thyroid hormones but in properly utilizing them...who knows.

I think this true and it seems to be borne out from reading posts here and at the Thyroid board. Many people who have CFS also have Thyroid problems because a weakened immune system can result in a breakdown in any system of the body. But there are also many who have only a thyroid problem but have been diagnosed with CFS primarily because of fatigue and doctors not really understanding the difference between CFS and thyroid abnormalities. But when those whose main issue is the thyroid are properly treated, it is ususally fairly easy to affect a change in their symptoms. Not so for CFS because there is no treatment to date.

HI

I have been taking T3 for my CFS, as a doctor I saw thinks this is the problem. I do not believe that this is the sole problem though. Kenny de Meirleir has a medical hypothesis paper out suggesting that in CFS the thyroid receptors are blocked (cant remember the explanation why offhand) and this explains why a lot of CFS folks are clinically hypothyroid with euthyroid results.

Do any of you get off-balance symptoms and symptoms of feeling a bit strange in the head as well as the fatigue?

Martin

Ya, I will definently get the off-balance feeling sometimes, it's almost like i'm drunk i just start to sway, or like i'm fallin all of a sudden, but it's only for a split second if that. If you mean by being funny in that head that it's hard to concentrate or think or even talk for that matter, than yes. I am a very articulate person but I find it continually difficult to speak because I suddenly can't pronounce words. I know the word and how it sounds in my hand I just have problems when i go to say it, drives me nuts!