My book is published. My story is out there, people have
bought it and are reading it. Hopefully it will reach far and wide.
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It was wonderful and a relief to complete and finally publish. The plan was to publish my results and recovery story through
the book, let people know about the book being available - and then move on. To walk,
or rather run, as fast as possible in the other direction.
It is a shame though that this illness is still being discussed; that M.E. or “CFS” still
exists, that so many people are still going through it. It is because I’ve
had such a great deal of interest and a lot of questions about my book and recovery that I’ve come to post a blog to cover a few points.
It's been a strange coming back into the ME/CFS world to
start letting people know about my recovery after leading a normal active
life for some time now. It is so very important though that true recovery stories are publicised
and sufferers know people do recover - and how they did it.
I know it was the recovery stories that kept me going.
Mostly it’s been heart-breaking coming back online to let
sufferers know about my book being available and read that others still going
through life as I did with M.E. or “CFS”. Many great people are coping
amazingly because, well, they have to. Others are clearly not coping and
understandably so. This was the reason for writing my story. I couldn’t just walk away and get on with my life
knowing so many are still going through what I did.
My medical test results were so significant - and shocking, that
I wished to pass them on. If I’d had this information when I first became ill I
would not have suffered so long with a painful physical disability which destroyed my life for over 15 years.
It's not incurable.
Unfortunately I have found that terribly, some are spreading
a myth that ME/CFS is incurable. It is not incurable. People I know personally
have made full recoveries from ME/CFS, they’ve gone on to have normal and very
active, busy lives even after many years of debilitating illness, without any
recurrence of symptoms. I’ve also heard of others who have recovered through people
I have met.
This seems to be a relatively new thing. While I was still
unwell it was communicated that recovery is indeed possible from ME/CFS - that people
do recover completely and get their full physical ability back. I was severely
ill with ME/CFS for over 15 years and have fully recovered. It is untrue
that there is no cure or effective treatment. In my case it was basic, simple
and low cost but for me in the end it took a great deal of research, a process of
elimination and the correct tests to get to the bottom of what was actually biochemically wrong. The
illness had a definite and identifiable specific underlying biochemical and
physical cause which then leads to very real and awful physically disabling
problems in the body.
If you have
ME/CFS you simply must ignore these comments completely. No-one knows if any
particular person can or will be cured until the correct tests and
treatment are obtained. In my case it was not until I accessed private medical
tests through fully accredited laboratories. It is most definitely not a terminal illness. I was horrified to see this being
falsely spread around.
Find inspiration.
Of course there may be some who don’t wish others to be well. There may be some who fear they will not get the same result that I
did. I can understand that, I took many chances along the way. I still took
them though – if I hadn’t I wouldn’t be where I am today.
Gladly though there are also many hugely supportive and
encouraging people, who want nothing more than everyone to do well.
It is possible that there are some who do not wish this
cause of illness to be known and this will become clearer through the book. There will be those who don’t like what I have written. One of the most
important things I have learnt through recovering from ME/CFS though and will
pass on; focus on the positive and moving forward to recovery, finding the answer for you.
The people who are
doing great things and inspire me each and every day ignore those who will try
to bring them down. Stay strong, stay focussed!
So far I have had such lovely comments from
people who have read the book, which in themselves made the writing and hard
work so worthwhile. Their comments have been heart-warming (thank you so much).
But I know there will likely be the negative. I certainly don’t wish this to affect or
put off those who are trying to help themselves, who are focussed on recovery
and looking for information through recovery stories.
Ignoring any negativity around me and taking positive action
for myself was so important in the end to find a way to recover. I believed for
a few years I would have to wait for someone else to cure me. I
sat or lay in pain, utterly exhausted and weak hoping that someone would come
along and help me, provide all the answers and sort it all out for me - and yes
for a while I had total faith that if there was a cure the National Health Service
would provide it. I feel different now. I realised I
needed to get the correct treatment for myself. I’d had enough of waiting after years of being disabled and took things into my own hands; I had to go and get the
required help outside of the NHS. It wasn’t ideal but my life was too important.
Myself and my family could’ve continued on and tried to use the little energy
and strength I had trying to campaign for better NHS treatment and asking why is no-one
helping while getting nowhere, or simply
carried on just suffering in silence (which to be honest seemed to be what was expected of
me). I didn’t, being so disabled for the rest of my life was not acceptable, I
wasn’t putting up with it. In the end I took control and did whatever I had to for
myself to get well.
The cause was basic science. This in itself is shocking, but
the true cause even more so. It is something already known about and has been
for many, many years. It is serious but there is known medical treatment easily
available. It is widely published in medical and science journals and the
information is available to everyone.
The quiet recoveries.
Some who’ve had M.E. or “CFS” recover and just move on with
their busy lives to never mention ME/CFS again - that is great! I can see why. Busy normal life
takes over, there is so much to do and catch up on. Thankfully I too am now on
the other side of the illness looking in. I didn’t ever know if I would be. I
can see now that every symptom and finding people talk about or report on regarding
ME/CFS could be traced back to being caused by what was found in my case. It’s also possible that it is the causal factor in other neurological illnesses.
From the biological processes and the
research articles I found on the cause of my illness, I can see how it could be
linked to a number of other neurological problems and so my results and
treatment may impact on them also.
Gladly I find biochemistry relatively easy, I’d studied it for two years at university. At the time I admit it wasn’t
my favourite subject but it was a major part of my course, the more I studied it I came to enjoy it and you had to do well
in to pass! We also had a pretty strict and determined lecturer! (I must look him
up and thank him one day). This meant I
could eventually, in hindsight especially; see how the processes occurring in
the illness were linked; how the cause had led to these processes failing and
how they then had caused the various physiological dysfunctions throughout the
body. It has been a case of pulling together linked information from various sources.
It is unfortunate it took so long to find what was actually wrong.
Staying focussed. For yourself.
Now I know the cause of illness in my case I believe there is a vast amount of confusing misinformation/distraction on the
illness. To what end? Focus is
what is needed. If other ME/CFS
sufferers have the same underlying biochemical cause that I had, I believe
patients are going to need to pull together and take their own action themselves
to get it investigated and treated correctly.
Since recovering I undertook a first aid course as a
requirement of my job, it was a 3 day course for professionals to meet health
and safety act requirements. It was an interesting and detailed course, well
presented by a fantastic emergency nurse with years of experience in the
accident and emergency hospital department.
On the last day of the course he covered the cause of illness as had
been found in my case.... yes, in a first aid
course, so it is indeed known about yet still it hadn’t been investigated in all my years of illness.
There appears to be a lack of understanding that severe chronic and
acute forms of the same illness can have the same cause and so same effective
treatment.
My private test results explain to me why national healthcare providers are having difficulty dealing with this correctly for
patients to reach recovery. While this
cause of illness should be common knowledge among all medics I believe it is
unlikely this will be routinely investigated by healthcare
providers, possibly due to either lack of accepted
knowledge, government healthcare policy or potential economic issues.
It really should be investigated by patients’ medics though and I hope this will start to occur if patients start to take action for themselves as I did.
Patients collectively could certainly change this.
Sufferers need to obtain correct and reliable testing.
Sad reports.
Very sadly according to reports I have read it seems that often bullying, victim blaming and disbelief appears to have been a default
treatment toward those with the illness, rather than dealing with it correctly
and efficiently for patients to get their physical ability back and get on with life. This can lead to
sufferers being made to feel they are the cause of their own illness. In my
mind this only serves to weaken the ill further.
Further, if indeed all sufferers with M.E. or “CFS” have the
same biochemical and physical cause as in my case CBT and GET at the very least
are dismissive of the illness and a cruel distraction to patients from finding
the real physical cause and getting their physical abilities back to be able to
move on with an active normal life. At worst I believe these methods to be abuse and
bullying of the physically disabled who could indeed have a very real physical cause to
their illness, pain and loss of physical function; which no amount of exercise,
rest, happy thoughts on their own, or further abuse will cure. This may occur
due to the lack of understanding of the biochemical and physical cause of the
illness in patients and so I hope my book and story might improve this.
It is possible that because of the nature of these results and
treatment there may be some who would not wish them to be released to the
public or other patients.
Keeping going.
I purchased a number of books on the
subject and tried various different private treatments with different
practitioners. I put everything I had into getting my health back. I was
essentially homeless. I’ve also put a
huge amount of effort into writing the book; four years of very hard work in
most of my spare time. Two complete rewrites for legal purposes and emailing over
150 contacts for checking and permissions to include various important parts of
content. The publishing and printing process has been long, complicated and detailed,
more so than I had first imagined. Then once the book had been printed I moved
on to developing and paying for the website myself. I have turned down offers
of times out to stay in and complete it, I did give up on it a few times but
then in the end came back to get it done. I’ve financed it all myself. I’ve come
up against stumbling blocks and many costs have been incurred.
This is not the reason to buy the book, I have been happy to
do it and it is my choice as I felt it important to make the detailed information
available. It has not been easy. But then are
things worth doing ever easy and cost free? The rest is down to you guys if you
would like to read my story, for yourselves.
I should mention the answer had been in front of me all the time;
I had come across the cause as was found in my case a few times over the years,
reading about it both online and in books, but had dismissed it completely, I
couldn’t see how it was relevant to me and my symptoms. Only after the medical test
results came back did I eventually see this had been it all along. For this
reason I have gone into detail in the book to explain the links, testing
methods, findings and related biochemistry. The full process I went through. It
was a big aha moment when the final result came back
from the doctor. Then it made sense and I could see how this had led to the
illness. I honestly feel if I just told you, you would dismiss it too as a
cause of illness. The processes and background leading up to finding the cause
was important.
No-one was going to do it for me...
A very big lesson I learnt through having M.E. is that no-one else was going to get me well; I had
to do it myself. I had to find out
how to get well. This meant taking responsibility and action for my own health
and not waiting for others to make me well. I realised I had to do it for me.
By law I am not allowed to say this or any book or treatment
will help anyone else and by law I cannot advise anyone to undertake or not
undertake any particular test or treatment. But legally I can publish my own
medical documents and results.
Strict confidentiality laws prevent anyone else
communicating my medical results in any way. My NHS doctor cannot share my
results with anyone and neither can any of the private practitioners I have
consulted or the laboratories who carried out the testing.
Only I myself can share my medical results and documents and
so I have in through this book which I have put to together so the full science
and context are explained. Otherwise the results will simply sit unlooked at on
my medical files, unshared and private. I also paid for the testing, so they
are my intellectual property to publish.
The few people that I have spoken to about the cause of my
illness ask me …are you angry at what was found after so long? I try not to be. What happened to me could happen to anyone. All the more reason
to publish my book, to put it behind me and move forward with my life.
My priority has been to make the book available to anyone
who wished to read my recovery story, and I am glad this is completed. It’s all done
and available. For you.
It's over to you. To move forward, onwards and upwards; finding
and dealing with the cause of ME/CFS effectively.
Catching up on life.
I have a lot of catching up
to do, life to be living and fun to have. My friends and peers in have become
well advanced in their careers, some becoming successful lawyers, teachers, business owners,
PhD doctors, web developers and successful in finance careers, while I was
unwell and mostly housebound with what turned out to be a detectable and treatable
illness for over 15 years..... I have some catching up to do, I’m getting there! My
future will be more about my moving on. Life after ME/“CFS” whatever may come!
Over to you!
I wrote the book containing the information for everyone
still suffering. I do hope it helps
inspire others to find the cause of the illness in their case too and they can
also recover. I’d really love to hear and read of others go on to write their
own recovery stories. I look forward to
it!
Most gratefully I can now walk or run away. Leave the
illness behind. I leave the book and information behind for those
still going through it.
For more information or if you’d like to purchase the book
please see my website
Don’t buy the book for me, buy it for you. I wrote it for
you.
The absolute best wishes to you all.
Zoe
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