Wednesday, 2 December 2009

XMRV results pending

After a pretty horrid couple of weeks, which exaggerated all of my symptoms, I have had a change of heart.  My initial thought was to freeze a blood sample at the ‘Breakspear’ and wait for the XMRV test to be developed in the UK.  Instead, as it has now become available to me, I have decided to get tested immediately with results due before Christmas.  Not only will it give me some sort of piece of mind, I can then correctly focus, depending on the outcome, directions to take in regards for avenues to follow and explore.  Through a forum, I found a women who has been organising this XMRV test opportunity for the UK.  The blood samples are to be taken at a London clinic, shipped to the US laboratory (linked to WPI) and the results sent back.  Nowhere as of yet in the UK offers this test, so many thanks has to be given to the clinic for coordinating this with the US laboratory and the women who has made all of this possible, for which I am very grateful.  I thought I would be very scared if it is found that I do have this retrovirus, but strangely I am not.  In fact, as my condition should not decline any further past my current worst (I have many symptom fluctuations), having XMRV confirmed would only aid possible improvements in health once treatments are researched and created.

Today I have been to the funeral of my best friends fiancĂ©es brother.  It was a lovely service and has put for the mean time my personal negative feelings about my illness into some perspective.  My thoughts go out to the family and friends.

Monday, 30 November 2009

Candida Albicans

Candida is a controversial topic whether or not combined with mentioning ME/CFS.  The medical profession accept candida when in the form of thrush or athletes foot and in definite weakened immune system illnesses such as HIV when it can become systemic.  However, not with ME/CFS, even though in the US it is sometimes known as ‘Chronic Fatigue and Immune Dysfunction Syndrome’.  What makes me suspect that a retrovirus or something similar is causing ME/CFS are the similarities to HIV.  Candida becomes present because of the immune system dysfunctions in both illnesses.  I do understand that there are also many patterns and symptoms that do not correlate, as with AIDS and not ME/CFS, the immune system eventually fails.

There are many nutritional clinics that claim by removing candida and supporting the immune system ME/CFS can be treated.  I recommend ME/CFS patients to get tested for candida, but I believe it to be a secondary problem.  Attempting to rebalance the gut is crucial and will hugely reduce some symptoms (as it has for me), but this does not address the root issues.  As I will explain in other sections, I have attempted to treat all the problems I have identified.  The theory I am using is that perhaps taking a load off the immune system might improve the chance of recovery, whilst at least making this current period of time as least painful as possible.

Saturday, 28 November 2009


I get very annoyed when hearing the public mention ME/CFS by the name ‘Chronic Fatigue’. This selects just one symptom and a really good analogy of this, is that diabetes is not known as ‘Chronic Thirst’, so please stop.  Thank you.

Friday, 27 November 2009

Antiviral treatment

Whilst researching current available ME/CFS treatments I came across an antiviral clinical study.  It was formed by a Dr Lerner at the Treatment Center for Chronic Fatigue Syndrome located in Michigan in the United States.  Dr Lerner has devoted his entire working life to analysing the correlation between viruses and ME/CFS.  His latest study revealed catagorising antiviral treatment into three subsets.  Those whose ME/CFS commenced from Epstein-Barr Virus (EBV), those from Cytomegalovirus (HCMV), or those from both. As my ME/CFS commenced from EBV and I have been tested negative for HCMV, I was keen to discover the approach that was taken.  The paper revealed the antiviral drug used for an onset by EBV was Valacyclovir, for HCMV was Valganciclovir, and went on to state that both should be used if both viruses were present at onset.  My EBNA IgG antibody for EBV is up at 200.  This is unusually high and although this result only shows a latent infection, every medical professional I have asked to why the value is so high has not been able to provide me with an explanation, just saying this titre remains up for life.  Just maybe this is the reason for such prolonged EBV symptoms, and a link to ME/CFS.  I will be interested to retake this blood test after a year or so on antiviral treatment, as this value has now remained constant for 18 months. 

Dr Lerner presented these results in the UK in 2008 and a link to the video presentation from his website is below.

An interesting question was raised by a member of the public at the end of the presentation, asking whether this will become available in the UK.  A representative replied, ‘it will take time for the ground rules to be put in place’.  This suggested over time this will become available.  I have recently read that the NICE guideline for ME/CFS will be reviewed in late 2010.  As of yet this antiviral treatment is still not offered so these procedures mentioned have not developed over the last two years.  It is common practice in the US to offer antiviral's, so in my view it must be down to funding in the UK.  I understand this treatment is inevitably not the complete answer.  However, if it has helped so many people with the same condition to even reduce symptoms, in my eyes is it worth a trial, especially as they reported no serious side effects.

Reading into the ‘Breakspear’ literature, it highlights they offer antiviral treatment.  This was the only place I have found in the UK to do so, but do they use the same drug?  Well yes, nearly.  After I undergo allergy testing on the product, I am to start on Aciclovir.  Dr Lerner recommends Valacyclovir for my condition but I then discovered something interesting.  Valacyclovir is a pro-drug and once inside the body is broken down into the active ingredient Aciclovir.  The reason I can see to use Valacyclovir over Aciclovir is that it is more absorbable and hence more effective with the final compound used by the body being the same.  I am to double check with the ‘Breakspear’ that Valacyclovir is not available, but am happy to have found and share a route for this treatment which many do not think is available here in the UK.

Tuesday, 24 November 2009

GET and CBT funding

I explained previously that I was attempting to gain access on to the leading GET and CBT programs in the country, by requesting funding from the insurance company that are now reimbursing my sick pay to my employer.  This has unfortunately failed at the first hurdle.  Before even submitting a privately funded case through my GP, the insurance company are not willing to fund it.  I was told over a telephone conversation that it was ‘too expensive and other just as good programs are available’.  They are to instead, locate a CBT expert in the field of ME/CFS within 20 miles of my parents house, to commence a 21 session fortnightly course (NICE guidelines).  It was not a surprise to me, nor too much of a worry that my experiment failed.  To be quite honest, I do not believe at this point in time either CBT or GET will further improve my health.  As a result I am not going to pursue the BARTS or KINGS hospital programs any further.  The only option I have left would be to self fund and this is still not a proven way to gain access.  I am already seeing a psychiatrist and it will be interesting whether an expert in CBT for ME/CFS will offer anything different.  The insurance company on a positive note are offering me therapy sessions to readjust back into society.  I had to be quite frank though and explain to them that this was a long way off, but at least it will be available to me when it is needed.  

Thursday, 19 November 2009

Retrovirus XMRV

In my first consultation at the ‘Breakspear’ the subject of the XMRV retrovirus was raised.  It has been all over the headlines recently linking it to ME/CFS.  At present, the single research study in the United States (WPI) found 67% of ME/CFS patients to have a current infection of the retrovirus using a PCR blood test and a staggering 95% if the blood was cultured, compared to under 4% (PCR only) in healthy individuals.  If you are unaware of the term retrovirus, an example is HIV.  Nowhere presently in Europe tests for XMRV, so I was offered two options.  Option one was for a blood sample to be sent immediately to Nevada at a cost of £700, or secondly, a sample could be frozen and sent to a testing facility in the UK once one was confirmed.  I was assured though that the ‘Breakspear Medical Group’ were liaising with a facility in Oxford and testing was to commence in approximately three weeks time.  After watching some news clips discussing the findings with the head of the research study, I went to my GP for some advice.  Unfortunately though, he had not even heard of this retrovirus, the headlines it had created or any NHS testing for it.  I was hoping in the light of such press that some guidelines might have been available, but once again I have had to make my own decisions without my GP about such important health matters.  

I decided upon the option to freeze my blood sample, as even if I was to receive an immediate positive result, the world at present does not know the next step to take.  Many more identical studies will have to be completed all over the world before any conclusions are made, and only then will research begin on treatments.  It must also, as an option, be considered as another red herring.  ME/CFS is an immune dysfunction and patients could easily have contracted XMRV after their illness began and the retrovirus not to be the actual cause.  This whole topic of research has a long journey ahead.  Therefore, so that I do not go insane with anxiety, I will attempt to ignore everything related to XMRV and focus on the my current positives.  The ‘Breakspear’ have and will continue to perform tests on me over the coming months.  Do I wish to be in the current 67% statistic confirmed to have the retrovirus, I am unsure, however I would then have an answer to my illness.  They have given me some hope though (at a cost), that whatever my XMRV result, they will investigate and treat my illness with their current techniques and help me like they have many others.

Friday, 13 November 2009


A close family friend gave me a book about ME/CFS to read.  It was called ‘Understanding Acute Onset Post Viral Syndrome’, published in 1987 by a medical professional.  I prefer this name than ME (Myalgic Encephalomyelitis) or CFS (Chronic Fatigue Syndrome).  It highlights the illness came about from a virus and does not focus primarily on fatigue, as their are many symptoms.  Although, I have researched that not all suffers had onsets from viruses.  Mine developed from ‘Glandular Fever’ so therefore unfortunately this has probably biased my opinion.  What was incredible to read in the book, was that the author accepted the illness existed (which was not all that common at the time), and wrote he hoped in ten years time tests would be readily available.  Another ten or so years on top of that and there is still nothing in the public domain.

This is an unpleasant view, but could it be that because the illness is not life threatening, governments have not done as much as they could have.  People living with ME/CFS would describe it as a ‘living hell’ and therefore much more urgency is required.  The only death toll I have found are suicide cases.  I appreciate people giving up coping in a situation where no help is offered, and everything has to done for yourself.  This in some extreme cases is just not possible before even considering how to fund treatment.  I have had some pretty dark moments in the past two years but try my hardest to remember the enjoyment I had from life beforehand and hope that one day those will return.

I must reiterate I do see a place for the two therapy treatments (CBT and GET).  What is so frustrating for ME/CFS sufferers is the understanding has progressed.  There has been extensive research undertaken all over the world looking into particular aspects of the illness, some getting excellent results.  Its seems that in the UK, NICE are not willing to deviate away from anything but therapy and offer such potentials, until a comprehensive conclusion is found.  I believe ME/CFS is a multi dysfunctioning illness with many possible reasons for a dramatic decline in health and a single answer they require may never be found.  Therefore, as I see it, patients must experience all potential treatments for themselves, to experience whether any possible improvements in health can be gained.

Wednesday, 11 November 2009


First things first, let me discuss the two treatments the UK does say it provides for ME/CFS.  'Graded Exercise Therapy' (GET) and 'Cognitive Behavioral Therapy' (CBT).  These are the only two treatments the National Institute for Health and Clinical Excellence (NICE) offer.  The medical profession follow these guidelines and never from my experience, even consider trying alternative options.  I must state right from the outset though, that my experience of these therapies is limited, as I have not even been provided with these treatments to date.  A few months back after I had researched them, I spoke to my GP to be told a harsh truth.  I found that KINGS and BARTS hospitals operate the leading programs for CBT and GET respectively and requested to apply for them.  My GP told me that as I am living in Kent, it was impossible to apply, as funding would not be given for out of London cases.  He explained that he had tried a year back with another patient, but was rejected on the basis of funding.  The only option I had, was to apply for the Kent hospital running a similar program (Maidstone), but with a year waiting list.  The surprise to me and especially a physician I saw who worked out of a London hospital was that my GP had not even mentioned these therapies to me.  Perhaps maybe in hindsight knowing the funding and waiting list issues he did not want to give me false expectations.  If the only two treatments (as seen by the medical profession) in the UK for ME/CFS are not even readily available to patients, in my eyes the NICE guidelines need updating.  This is before even discussing whether or not these therapies actually cure the illness.  

I don’t disagree that CBT and GET are very important in an overall package of treatment as I have said before.  I just believe so much more can now be done.  ME/CFS does cause significant cognitive issues, for me mainly being an immense amount of uncontrollable anxiety.  Before I moved away from my home and place of work, I also went into a deep depression.  This was from being unable to perform normal activities, deal with my responsibilities and having a serious amount of mental confusion.  I did not understand why I was ill and no one could to tell me otherwise.  I have now managed to control my depression and to a degree my anxieties, with my new lifestyle partially away from society at my parents farm.  It was vital for me to understand my new physical and mental limits, otherwise known as ‘pacing’, but this in itself has caused other cognitive problems.  As a 28 year old, a serious lack of socialising or undertaking of any activities, does often drain my positivity and any reserves.  As a result I have started to see a mental health professional psychiatrist.  I believe it is key to remove all stresses and anxieties to allow the body to repair.  I can see how not that long ago the medical profession saw ME/CFS as a cognitive illness, and offered patients antidepressants and told them to get on with their lives.  However, I hope this blog will open some peoples eyes and broaden there appreciation to how far the world has actually come.

Graded exercise (as I understand it from my research) is a form of therapy that trains a patient to appreciate their new levels of personal capability.  By steadily increasing activities but ensuring their current maximum limit is never surpassed, the hope is that over time the body will allow such increases with no worsening of symptoms.  However much this sounds like a reasonable approach, I believe it has its limitations, which is why it can only be part of a treatment plan.  I prefer to use the phrase ‘pacing’ to deal with all my activities per day.  After a few year with the illness I now know exactly my limits, and am very stringent not to over do anything.  This is fundamental and increasing activities does not require a program.  Each individual should know in themselves when extra activities can be achieved.  The danger of pushing past the body’s current limit, which I have learnt from the hard way, is it then takes hours, days or even weeks to return back to how I previously felt.  The way I like to look at this cycle now is the energy my body used should have been been put to improve my health.  This can all be very difficult to manage.  At times, I have felt the urge to push the boundaries, to pretend occasionally I am having a normal day.  The process is frustrating, but over the year I have developed a good understanding and any small improvements in health, have marginally allowed more activities and greater positivity.  I understand how some individuals do require a strict teaching in these methods.  I have been lucky enough to have my parents look after me.  All my daily stresses of life have been taken away, however GET would be critical in cases where this was not possible.  I believe to enable the best chance for recovery these approaches must be taken, but understandably it all depends on the extent of the illness.  

My work have switched me onto an insurance policy to cover my sick pay.  This gave me an idea as the insurance company would want me to return to work as soon as possible.  I am going to ask if they would fund my CBT and GET and if accepted, request from my GP to apply as a self funded case.  This has not yet happened but any new information will be shared.

Monday, 9 November 2009

Breakspear Medical Group

I have a lot of gathered information and personal experiences of treatments (mainly seen as 'alternative' medicine) from this last year, which I wish to share and will do over the coming months.  Firstly though, shortly before creating this blog I found a new potential avenue, and have an initial consultation in a weeks time.  A hospital in outer London called the 'Breakspear Medical Group'.  It seems to be the only hospital in the country (UK) that offers potential treatments for ME/CFS from a medical view point.  I must state the 'Breakspear' is not an NHS hospital, nor is it a common private one, like examples such as 'Spire or Nuffield'.  The only other treatments through hospitals I have found, are that of 'Graded Excersise Therapy' (GET) and 'Cognative Behavioural Therapy' (CBT).  These, although essential to the overall package for treatment, are therapy's and do not  solve the underlying problems.  One general physician I saw was shocked that my GP did not even advice me to try these, however the details about this will be discussed in greater depth another time.  As you can probably tell, I have been an individual who has not sat down and accepted the natural path of my ME/CFS.  I strongly believe if I had done nothing I would still be where I was a year ago.  I will endeavor to find all possible treatment options available and hopefully create a complete reference and experience list for others.  I will post my findings about this hospital shortly.

The purpose of this blog

I am going to use this blog not as a story, but to discuss and explain all the treatments I have tried and which worked or not.  I hope this will then help others in the future, to have a starting point to assist them instead of researching for themselves what is available. It took me nearly a year from my ME/CFS diagnosis, searching for and attempting available treatment options, before any improvements (however small) in my health were witnessed. I have taken advice from as many people in and out of the related field as possible to come to my own conclusions. This illness is a very personal thing with everyone having some of there own problems. A uniform approach for everyone is therefore not possible. However, some symptoms are common and so if listing mine and the approaches I took to help my illness, can help others, then brilliant. As most people will have read or had first hand experience in, the medical profession for this illness offer near to no advice.

How my ME/CFS began

I became very unwell in January 2008 with an unknown illness. My GP knew it was a virus, as I possessed a high white blood cell count, however could not determine its type or origin. At this time I also began to have severe sinus infections and was given multiple sessions of antibiotics. Three months later an ENT surgeon diagnosed I had Glandular Fever. I carried on with work and only took time off when physically unable with many weeks taken ill at home in bed. Looking back this was a bad idea to continue working and assuming the symptoms would magically go away, but this was the advice I was given from my GP. As the year progressed the quantity of weeks taken off work increased, and I began to feel even worse. Eventually in November 2008 I stopped work and moved back to my parents. Looking back over that first year, I would describe my Glandular Fever symptoms as decreasing and my ME/CFS as increasing. Early in 2009 I was diagnosed with ME/CFS.