The 10 Most Dangerous Mistakes You Can Make With ME/CFS



Going to a doctor who doesn’t fully understand (or even believe in!) M.E/CFS.

This is by far the worst mistake you can initially make when you’re battling with M.E/CFS,

I know when I was initially seeking answers to why I was feeling the way I was feeling, I dreaded going to doctors clinics because no one seemed to believe ME/CFS was REAL!

They either said “here take these antibiotics” or “let’s get more blood tests that showed nothing.


I was scarred from blood tests in the end!

But I know that this wasn’t just me…

Most of my clients give up on the medical profession because they are told that they either need to just rest the tiredness away or they don’t know what to do with them.

I had one client whose doctor said…

Harden up! You just need to be more positive!”

Oh man…

It really is shocking and can really effect you on an emotional level..

Let’s face it…you are already feeling terrible at this point…

And to hear a doctor say what you are going through is NOT REAL is really upsetting and can really throw you off if you are feeling venerable.

So seek out the people that TRULY UNDERSTAND this condition and stay away from the non-believers


Dismissing your illness


Getting MISDIAGNOSED when you are classified with depression/“it’s all in your head!”

Again a doctor who does not believe in M.E/CFS will most likely say you depressed or it’s all in your head.

This happened to me early on with my diagnosis with M.E/CFS. I remember getting told to see a psychologist…

So I did.

Because you listen to these “so called experts”.

The Psychologist said to me, “So Toby, how do you feel inside, you must feel quite depressed?”

When she said that to me, I just looked at her..

…and I left her clinic immediately.

Seriously some people just don’t get it. Although depression can commonly co-exist with ME/CFS, I didn’t have depression. I WAS just extremely frustrated, upset and angry that I was sick… And couldn’t do the things I was once able to do with ease.

Who wouldn’t be angry and frustrated if that happened to them??

The same thing has happened to many of my clients. Whilst it can be common to get secondary depression from having M.E/CFS. Outright saying it is all in your head is complete and utter crap!!!! Be very careful, Although M.E/CFS can lead to secondary depression, what you are experiencing on a physical level may well be real. Going down the depression path medically is fine, but not when you or your doctor dismisses the real core issues of why you are so tired and sick all the time, your body is telling you things, that your doctor or a psychologist cannot see.


Trying to exercise hard or push yourself out of feeling tired and exhausted

Another myth that people say is SWEAT IT OUT or push through it. I’m not going to lie, when I was sick with M.E/CFS for the first 3 months I tried to keep being the old me. I was trying to run as much as I could, kept playing sport and was wondering why I would sleep 16-18 hours a day, have severe headaches and my body felt like it had been hit by a bus.

I believe this effort to hold on to the old me in terms of fitness definitely had a negative impact on my recovery. Because I didn’t know how to listen to my body, I would push through all the pain and suffering as if it was a good thing. You know the old saying “no pain, no gain.” That saying is defiantly not for people with M.E/CFS. Until I started listening to my body and doing what is right for it, I didn’t move forwards. I see this with my clients all the time.

They go and get help from a physiotherapist or personal trainer, or even worse their doctor says just run it out. They come and see me and wonder why they feel so crap. I know one of the biggest reasons why my program has so much success, is because I know what the human body should and shouldn’t do whilst suffering with M.E/CFS. Unless you have endured it yourself, you cannot fully understand the importance of progressive measures for each individual.

You can never compare two stories as each body is different and will have a different effect. One of the quickest ways to fall backwards in your recovery is to do exactly that, push yourself beyond your limits…

You must avoid that at all costs.

One day you will be able to do whatever you like with no consequences like you do with M.E/CFS now. However you must take the right steps to get there! The body needs to be nurtured and progressed back into daily living slowly but surely to maintain energy levels and health, not to deplete it more than it already is.


Trying detox diets and other diet fads that will leave you at harm

One of the biggest setbacks I had was from trying a diet that was suggested to me by a naturopath. I lost excessive weight, had no strength whatsoever, and lost a lot of muscle condition. Just because it is seen as healthy doesn’t mean it will help you. Each body type is different and needs to be looked at individually.

This is why when clients come and see me, I say don’t worry I won’t put you on a crazy diet you can’t stick to or manage. The body needs fuel, good nutrition. Starving yourself of carbohydrates or fats can be very dangerous and lead to harm. Again each person is different. You need to do what works for you.

Trying crazy diets and detox’s can be very harmful whilst your health is at a low point, be very mindful that your body is sensitive to any change that occurs in the body.

This is why extreme diets and detoxes should be investigated before trying it yourself. I have seen clients end up in hospital because they listened to some lunatic who said this so and so diet will cure them of their M.E/CFS. A well balanced nutritional plan should be implemented for long term results. 


Expecting something or someone else to FIX YOU.

Putting expectation on a thing (pill) or a health practitioner (person) is simply CRAZY, but it is easy to do when you are at such a low point. I tried anything and everything when I was sick. Some things helped a little, but majority of things made me worse. I remember going to this crazy doctor an hour away from my house.

He was the guru of M.E/CFS apparently. We would drive there (my parents drove me as I couldn’t drive because of lack of energy) We would sit in his waiting room for hours sometimes, and then when I walked into his room, he would do all kinds of crazy things. Once he made me hum happy birthday whilst he tapped on my back. After 20 sessions he said I was M.E/CFS free.

I was cured he said. I looked at him at said so what do I now? I asked him if I could run again. He said sure go for it. So I literally when straight to my car, put on some runners that I hadn’t worn in over a year, and tried to go for a run. Within 3 minutes of running, I collapsed on the side of the track and was bed bound for a week.

That was the turning point for me. I realised that I could not expect anyone else to fix me but myself.  Yes that pill or person may help you, and that whacky certainly helped keep me going, but they will not fix you. Placing attachment on this will lead to set backs and despair just like I did because you become reliant on these things and without them you will be left back at square one.

Getting help is fine and should be encouraged, but expecting it or them to fix you completely is another story. The reason why I have an application process for my program and screen all my clients is because I want to make sure they are ready to help themselves. Without helping yourself, you will simply go nowhere. Health is taking responsibility for yourself. It’s worth it.


Pretending everything is fine ALL THE TIME

Putting on a brave face is easier for a short while, until it all blows up and becomes too much to handle. During my 4 year recovery I did this a lot. Especially in front of friends, I was almost embarrassed to tell them about my problems. Plus they would never really understand anywhere right. What chances do they have in understanding this illness if my doctors can’t even understand it.

Not accepting your current situation and circumstances can do more harm than good to your health long term. If you keep pretending your fine, expectations from others will be bigger and the expectation on yourself will be too much pressure, especially when you are already feeling terrible right now. Trust me on this one! Just remember acceptance is not resignation.

Start with where you are at, and build from there. You may lose friends, a lot of them, just like I did. But the ones that care and the true friends will stick around and be there for you. It is tough but it is important to focus on you and your health, put yourself before others.


Googling CFS and researching ALL the negative crap that comes with it. (NOT ALL OF IT IS TRUE) CFS doesn’t have to last forever!

Yep we have all been there – 2 am goggling cures and remedies. Only to find most of the information on the net about M.E/CFS either way to scientific to understand and actually put into practical day to day living, or just completely negative and untrue. I remember googling help for M.E/CFS at 2 am one night early on in my recovery and I came across a site that said that M.E/CFS lasts forever, and that some people stay in wheelchairs for ever.

I remember going to bed that night, not being able to sleep because I was so scared and worried that it would happen to me. After that night I stopped researching all together and only surrounded myself with positive stuff that lifted me up not down. That is why I created in the first place to have a positive space for people with M.E/CFS to come and be inspired and actually realise they can improve. It is a special thing that I receive emails and messages every day for.

Just to have that hope and belief that it is possible is a very powerful thing. 


Looking for quick fix cures or remedies that won’t work.

Again I tried soooo many things that I thought were going to be the answer and left me going backwards and feeling sorry for myself. You have to give up on the quick fix idea. It just doesn’t work.

That I why I am so passionate about long term health and recovery. It has to be realistic for each individual.

LONG TERM HEALTH = long term wealth. Be smart and realistic about what you REALLY NEED. It wasn’t until I stopped searching for the quick fix stuff that I actually started recovering.

Stopping the quick fix cure search will save you a lot of time and a lot more money. I have seen clients spent upwards of $50,000 dollars or all sorts of tests and remedies that didn’t work. Rather look for long term health solutions that are going to be safe and effective LONG TERM. 🙂


Getting too much advice from TOO many people.

Don’t get sucked into everyone’s opinions. After all they are just opinions. I had the problem early on when I had so many people telling me what to do, I became overwhelmed and didn’t even know where to start. It is must safer to get advice from someone who understands your condition and actually knows how to overcome it.

That is something I believe CFS health makes it special is because we understand the illness, we have been through it and we have recovered from it. You can’t get much clearer knowledge and understanding then that. 

Asking everyone opinion can be a good idea at the time but eventually it becomes overwhelming, we try too many different things at once or we just get hooked on one idea and stick with it, only to see all the other areas of recovery crumble around us. Be careful on who you listen to. There are a lot of apart experts in the field who actually don’t UNDERSTAND what it is like to have CFS and what it takes to improve recovery.


Staying in the BOOM and BUST cycle

So many people with M.E/CFS are constantly pushing and crashing. One good day, 5 bad days. Don’t worry, that was my biggest problem too. One of the worst things I did was constantly push my body beyond its limits, because of old habits and mentality. It took me TWO WHOLE YEARS to fully understand the push/crash cycle and how to stop it.

Now my clients learn this is week one of my program and once they get on top of that, they really start to improve their recovery. The problem with this constant pushing and crashing is that it is a vicious cycle to be in, and hard to get out of. Who can blame them?

Most people with M.E/CFS are high achievers or over doers, and because good days are hard to come by, the instant reaction to waking up feeling normal again, is to use up all the energy they have to do the things they need to do or love doing. The problem is the body is not adapted to that physical or emotional stress yet, and they come crashing down, have a flare up and onset of symptoms which can last anywhere from 1 day to months depending of the severity of activities one has done.

It comes back to being conscious of your current situation and circumstances, and rather than making any radical changes or going from zero to hero overnight, it is very important to first pace and then secondly progressively improve daily routines and activities over time, not overnight. Avoid the boom and bust cycle as much as possible, so you can find your baseline and start to steady your health and recovery path.

I hope my insights help you with finding the right direction with your health. As a past M.E/CFS sufferer I know exactly what it is like. That is why once I recovered starting helping others with their recovery because there was just no clear path to improving ones health from this terrible illness.

It sounds like it is almost too good to be true. But it is possible. I am walking proof and thousands of others have recovered through my CFS health online recovery program to. Check it the CFS Online Recovery Program here…


  • Could it possibly be that there are a lot of people misdiagnosed with ME and that’s why they think you can fully recover? Because from what I’ve read.. as of now..there isn’t a cure. As well some people never recover and die. The good news is they have just discovered a biomarker in research that may lead to proper diagnosis in the near future. Let hope to God even that happens. So many of us are doing everything we’ve been told and do not get better no matter how much we try our how much we want it.

    • I don’t think that’s the case. At one point, all of us were generally healthy, and then we weren’t. I’m of the opinion that in general, if something has broken, there’s a possibility you can fix it. Maybe for some people, whatever happened that has caused the problem has gone too deep and so is very difficult to fix, maybe for others that isn’t so – it could just be a matter of severity in that regard (not necessarily in terms of symptoms, mind you, but in terms of how badly a person is broken and how susceptible they are when it comes to various treatments or setbacks affecting them).

  • I have been suffering CFS for nearly 2 years. I have come along way since the early days. I certainly have found Toby and his colleagues a big help. But I have a question – my brain fog cleared up for around a year, but in recent months I have filed by self putting in the odd word into sentences out of context, and last night I could not work out how to use the dvd control for a while.

    Has anyone else experienced a relapse with brain fog whilst the recovery has been going over all well?

    I have had a number of flareups, but have been managing well overall, but the brain fog returning has thrown me

  • I have had CFS since 1989. I got it when I was 21 and studying in Jamaica, after a series of vaccinations. I was training for a national 10K and while doing a training run, felt as if I was having a heart attack. I managed to drag myself to a friend’s house who later told me my eyes rolled up as if I was having a fit. I now live in Trinidad and Tobago where there are zero support services for a condition like ME/CFS. This is the first chat I am joining in all those years because i believe in recovery, not disability. I also believe that when the student is ready, the master appears. I have just turned 50 and believe that my second half is going to be better than my first and like Toby, I can help people by sharing my experience. It took me many years to realise that I had food allergies that caused my brain fog, such as wheat (especially) and dairy. I used to be in and out of brain fog but since eliminating wheat from my diet, I don’t have that problem. I think it is the way food is being prepared nowadays and somehow we are more sensitive to the toxins, etc. Neurologists will tell you that they take their patients with dementia, Parkinson’s, etc, off of wheat because it is neuro-inflammatory. Wheat is also inflammatory to the gut of those predisposed to Crohn’s, IBS, etc. For me the toxins in meat (hormones and antibiotics) also caused problems which my liver and kidneys weren’t handling properly. Now I eat mainly seafood and occasionally meat with a lot of olive oil, the latter being good for the ketones that the brain needs. In Trinidad we hunt in seasons and wild meat is better because it is organic. However, I have lost the taste for meat unless my body calls for it. I also believe that swimming in the sea is therapeutic. The important thing for me was to get the gut sorted because that is where the majority of your immune barrier resides, along with your skin. That and a strong belief in a good God who I think is guiding me to lasting recovery.


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