23 posts tagged “cfs”

In October I posted this post titled:

ME/CFS patients are being incorrectly treated-effectively abusing our human rights! Help us fight!

The article I have posted here today is part of a statement released by One Click who are putting this case to the courts.  It has good news. 

Firstly the required funds were raised in order to have the case heard. 

Secondly they have secured an expert witnesses who will be supporting this claim.

Thirdly it appears that the claim will be heard in the High Court.

Extracted from the posted article:

Dr Bruce Carruthers - one of the foremost leading experts in the world on ME/CFS and whose international medical consensus Guidelines make those of NICE look like fatal amateur night – surfacing in the High Court.

Dr Bruce Carruthers is the lead author and co-editor of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (The ME/CFS Canadian Guidelines). Funded by government, the ME/CFS Canadian Guidelines incorporate most all scientific research done on ME/CFS for the last ten to fifteen years.

Produced by a process of international consensus by a panel of scientists and expert physicians who have between them diagnosed/treated over 25,000 patients around the world, the ME/CFS Canadian Guidelines are the most advanced, consensual, clinical diagnostic criteria on this illness available in the world today. As such, they have long symbolised the wooden stake in the psychiatric lobby vampire heart ever since their publication in 2003.

Previously a Research Scholar on the Medical Research Council of Canada amongst his many other senior posts, Dr Carruthers is without doubt one of the greatest ME/CFS experts alive in the world today in regard to criteria and guidelines over this neurological illness, classified as such by the World Health Organisation under ICD.10 G93.3........

......

What presently matters is that we have at last been granted the funding for our expert witnesses and our case is now full-steaming ahead.

Sir Winston Churchill, British politician 1874 -1965, knew what he was talking about when he said, "The chain of destiny can only be grasped one link at a time." We have grasped our latest link most firmly and are now on to the next, employing the professional vice-like tenacity grip on your behalf for which One Click has become so famous.

I would like to personally thank the expert witnesses who are providing pro bono medical testimony for our case in the High Court.

I would like to particularly thank Saunders Solicitors LLP for their superb handling of legal events and also to thank our barrister Kate Marcus from Doughty Street Chambers who is now in a position to work up our expert evidence.

 

But above all I would like to thank YOU. All of you from around the world who are making this case possible.

I quote from the document Very Simply We Did It: “What this campaign has so starkly illustrated is that it is entirely possible for patients and their extensive friends around the world to band together and fight back to correct injustice. The days of the Expert Patient and their associates making their voices formally and legally felt have now arrived at last thanks to you all."

Between us all from around the world, we have created a legal fighting force that will not be denied.

I will be writing to you all further anon as our legal challenge of the appalling CFS/ME NICE Guidelines in the High Court progresses. Some of the information that I will doubtless have to impart to you all in the future may well rock you to your foundations.

Onwards and upwards dear friends. Our legal course is set fair.

Jane Bryant
Director
The One Click Group

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So personally I would like to say a big thank you to everyone who is supporting this case.  It is great news that the case appears to be going ahead.  Well done to all.

It has been a while since I have mentioned my treatment, so I guess it might be time to give a bit of an update.  I have been on it now for about three and half months, so I guess I am about on track time line wise.  I am now nearing the end of phase 1 and if all goes to plan, I will be starting phase 2 in about three weeks.  In total there are four phases.

 

It has certainly knocked me around physically.  Prior to starting treatment I had started doing a couple of hours work at the local pharmacy, but I haven’t been able to since shortly after starting treatment.

 

The exposure to sunlight restrictions have been an absolute pain, as I have felt like I am living in a prison.  I found that too much time in a car travelling extended distances even though I was totally covered, still allowed enough exposure to sunlight to be a problem.  So I have to be extremely careful how much exposure to sunlight I have, which is not much at all.  As a result I have missed out on some family trips away; luckily I can handle my own company.

 

The extremely hot weather spells have not been met with my approval and have added to my restrictions in terms of getting out of the house.  Getting out in gear that totally prevents sunlight exposure in 40+C heat is not very much fun at all, plus the heat increases tissue penetration of the antibiotic and therefore results in an increase in symptoms.

 

The days when the antibiotics kick in are not pleasant to say the least, and I found that the last increase in antibiotic M two weeks ago really had a major impact and I have experienced a lot more unpleasant physical symptoms.  It has made for some rather depressing days.  There are days I wonder why on earth did I start this, but I know I cannot and will not stop unless it gets to be totally unbearable.

 

The good news is that my blood tests are showing that something is definitely happening in my body and my immune systems is in fighting mode and that is why I am experiencing the symptoms and that is what is supposed to happen.  I am used to wearing sunglasses whenever I am awake and my eye’s sensitivity to light has decreased when I compare the sensitivity when I initially started treatment to now.

 

At this stage I cannot say whether the last 3 months have been worth it, as I have got at least another 12 to 15 months to go in full treatment mode and therefore a few more bad days to come.  Hopefully one day my Mum will understand that I cannot say if the treatment is helping me and one day I won’t have to regularly say to her, “No Mum I do not feel better yet. I am not supposed to yet, as I have to feel worse before I can feel better.”

 

So that is the update.

I am still here and I can still smile on most days!

For those who are not aware of this I have an illness called Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).  The history of this illness in terms of acceptance by the medical profession and the community at large as a legitimate illness has not been very favourable and that is saying it mildly.  To be honest the treatment of patients with ME/CFS has been a disgrace in the highest proportions, to the extent of some treatment being deemed as human rights abuse.

 
The issue now is that the UK NICE guidelines are going backwards in their thinking and are approaching the treatment of ME/CFS as a psychiatric illness.  This classification has huge ramifications for ME/CFS sufferers in the UK and possibly worldwide.  ME/CFS support groups are now trying to raise funds to oppose these antiquated and biased guidelines and we need your help.

 

For me personally I have experienced the lack of understanding by the medical profession and at one point the lack of understanding and compassion and inappropriate treatment pushed me to the brink of nearly removing myself from this world.

Still to my amazement we as patients still have to fight to get our illness recognised as a physical illness and not a psychiatric illness.  In reality this is totally absurd as the World Health Organisation has recognised ME/CFS as a neurological (i.e. an illness originating from physical origins) for decades.  Other examples of neurological conditions include Multiple Sclerosis, epilepsy, Parkinson ’s disease, just to name a few.

 
Not surprising is that the above mentioned neurological illnesses have also been deemed as psychiatric illnesses in the past.

Multiple Sclerosis (once known as creeping paralysis) was once considered a mental disorder caused by female hysteria and the removal of women’s ovaries or wombs was not unheard of.  This view meant little or no extensive research was conducted into the mysteries of MS, until very recent times. This led to the misguided conclusion in 1920 that men were more susceptible to MS, because women were mistakenly diagnosed as suffering with hysteria. Only recently has research shown MS to be neurobiological rather than psychological, resulting in a very different attitude towards MS patients. Other disorders once considered psychiatric: Parkinson’s disease, asthma, and epilepsy - to name a few.

In October 2001 it was discovered that CFS/ME had been ‘unofficially’ reclassified as a mental disorder in a U.K adaptation of a WHO publication, the ‘WHO Guide to Mental Health in Primary Care’, developed by the Collaborating Centre of the Institute of Psychiatry, London.  It was included under the classification F48.0 relating to mental, behavioural and neurotic disorders (neurasthenia).  Despite numerous complaints being made to the Collaborating Centre of the Institute of Psychiatry, and ICD-10 classifications being mandatory in the UK, sales of the book were allowed to continue unabated for years until almost all 30,000 copies had been sold. Then and only then was an erratum slip issued.  This misclassification also led to CFS/ME being wrongly classified as a mental disorder in the NHS Mental Health Data Manual.  It is noteworthy that CFS/ME has once again been included in the 2^nd edition of the ‘Guide’. However, the title of the book has been (conveniently) altered to include both mental and neurological disorders, and a few neurological disorders added. (Source).

There are some very good guidelines available for the medical profession to help them effectively manage ME/CFS and these guidelines are based on real scientific evidence.

Here are some examples:

The Canadian Consensus Guidelines

The South Australian Guidelines for GPs

The Clinical Guidelines for Psychiatrists – which clearly state that ME/CFS is NOT a psychiatric illness.

Below is a letter taken from the “One Click” website explaining the current situation and why it has an impact on many patients worldwide and why we desperately need your help.

We need to have a pledge of 20, 000 pounds to get the legal process under way.  Even the smallest pledge will help.  At present the pledged amount is 6, 200 pounds and we only have until the 5^th November which is only 12 days away.  We don’t need your money at the moment, we just need you to make a pledge that when required you will donate the amount you have pledged to the fighting fund.  There is more information on the One Click website.  All that is required is for you to send an email with your pledged amount.  See at the bottom of this post for the email template.

 

Dear All

For disenfranchised patients in conflict from many fields and the doctors, scientists, politicians and disparate advocacy groups et al who support them, this short paper is perhaps one of the most important that you may ever read in your lifetime.

This paper is about David against Goliath, harnessing the power of the internet and every other means possible to raise funds to prosecute the case for patients in conflict through the courts. It is about previously powerless patients taking the reins. Never has this been done in this way before. The eyes of the world are upon us. This initiative may well change the face of fundraising as we know it to be today. We are making legal history.

I would like to start by thanking everybody who has lent of their help and support in so many ways for all this time in getting this challenge of the CFS/ME NICE Guidelines by Judicial Review ready for publication, action and off the ground. Hugs, slapped backs, victory signs, the lot! Thank you!

I would particularly like to thank James Saunders, Senior Partner of Saunders Solicitors LLP, the firm conducting this case. The firm's sincere belief in the justice that is well overdue to all those wronged patients in conflict has kept us all going on One Click in the darkest of days, to culminate in the legal action put before you today.

Although this case is specifically about legally challenging the appalling National Institute for Health and Clinical Excellence (NICE) CFS/ME Guidelines, the implications and importance of it are in fact much wider than this.

Whether you fully understand the extensive history of the disgraceful saga of what has been done to ME/CFS labelled patients in the UK and all over the world for so many years or not is almost irrelevant in this case.

This issue is about the rights of previously powerless patients to take their case to court and to let the judiciary decide. Not the government and not the psychiatrists, but the law. As such, this case has worldwide appeal to millions.

The Worldwide Appeal

Other groups from different countries - all of whom read and/or distribute One Click material - may well ask: what has this Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) UK legal battle got to do with us? The answer is simple. Everything.

From Australia, New Zealand, the United States, France, Germany, Italy, Switzerland to name but a few countries and everywhere else, this case of the maltreatment of patients in conflict specifically concerns YOU.

ME/CFS misdiagnosis is being carried out on a massive scale around the world because it is an easy box to tick and a simple label to append. It is the ultimate wastepaper basket diagnosis. From cancer to variantCreutzfeldt Jakob Disease (vCJD/Mad Cow), Multiple Sclerosis, Lupus, Parvovirus Infection, Guillam-Barre, Lyme Borreliosis, Stroke and so on as but a VERY few examples, many patients have died whilst under the exclusive care of the psychiatrists who go to extraordinary lengths to bury their mistakes.

From vaccine damage to those sick children forcibly ripped from the arms of their parents by the State through the devastating secrecy of the Family Courts with the much discredited catch-all label of Munchausen Syndrome by Proxy/FII, this legal challenge mounted by One Click concerns YOU ALL.

I fully recognise that many others have their own projects that equally deserve meritorious financial attention. But I would say this. One Click has helped many disparate advocacy groups and people down these years by publishing their material to maximum worldwide effect and distribution. We have provided this service completely for free and have never asked for a penny. Not one. Now we are asking, please, in the nicest possible small way.

We fully appreciate the financial constraints under which many labour. But surely, even if you are on the terribly limited government benefits provided for by the State with which you are forced to eke out the most painful existence due to your ill health inability to work, you too can surely afford the equivalent of the cost of a cup of coffee and a sandwich that will help One Click and their excellent solicitors put the legal case for these patients from so many ill health walks of life?

Of course it would be great if people could/would pledge large sums for this most deserving legal case, but we need to be realists and pragmatists. If every person who reads One Click (between 4,000 to 8,000 hits per day on the website, every day of the week from 120 countries around the world) would pledge just £10 (or whatever currency denomination equivalent) to this Legal Appeal, our legal costs would be covered in an instant.

Please do not think for one single moment that what is being done by the psychiatric lobby to patients in Britain is none of your business. It most certainly is - morally, ethically and legally. If the psychiatric lobby is allowed to proceed full steam ahead without legal check with these CFS/ME NICE Guidelines successfully clinicised in Britain that are granting this lobby in excess £300 million, you may absolutely rest assured that what is being done to patients in Britain will be coming down your way very soon. An equivalent of this is already happening in some other countries.

We are asking for pledges, please, from all of you around the world - Australia, New Zealand, the United States, everywhere. In dollars, francs, euros, pesos, pounds, rupees, shekels, rials, rubles, bahts, dinars and yuans et al, the currency denomination is of no import. What counts is that you make your pledge to help humanity.

I will personally be contacting many of you directly, shortly. I predicate that there will not be another opportunity like this so perfectly crafted to call the psychiatric lobby to account in my lifetime and as such, I will leave no stone unturned to help patients.

History

I would now like to turn, please, to give you a very short potted history of why this legal challenge is so important. It is impossible to encapsulate the psychiatric lobby history of some fifty years malfeasance in this short paper and so I won't even try. Instead, I will do my poor best to provide you with the most sincere rationale of why the issue put before you today matters so much to so many and why it is so very important.

ME/CFS labelled patients have been appalling badly treated for many years. This goes straight to the heart of Patients' Human Rights.

We illustrate, for example, the overwhelming case of very ill children forced to exercise by the psychiatrists and told that their illness is all in their heads with feeding tubes shoved into their stomachs, lying in darkened rooms or locked away from their families in psychiatric wards. This has been done to them simply because they have had the terrible, terrible misfortune to be labelled with ME/CFS, recognised by the World Health Organisation as a neurological illness, but denied by the psychiatrists.

Numerous families have been utterly destroyed with what has gone down, with many children forcibly removed from their homes by the State under spurious grounds to force treatment.

We give you as but one example, the case of what was done to young Ean Procter as recounted by his Mum that is matter of public record on the Isle of Man and everywhere else.

This semi-paralysed eleven year old, ME/CFS labelled child was deliberately thrown into a swimming pool by the psychiatrists with no floating aids to see if he would sink or swim, to ascertain whether his paralysis was genuine or not. This is what these psychiatrists do to children in their atrocious financial championing of 'somatoform disorders'. Ean sank and had to be rescued from the bottom of the pool. These people nearly killed this child in an attempt to try to prove their risible 'somatoform disorders' point. This is what the psychiatrists do to ME/CFS labelled children in Britain, whether their parents approve or not. The cases are legion and still occurring today in one form or another right around the world as I write this to you now.

In 1999 the BBC took up the case for patients and broadcast a chilling and devastating exposé of the plight of ME/CFS labelled patients in the Panorama programme, Sick and Tired. Despite much public hand wringing and angst subsequent to the programme’s broadcast, once the waves of public outrage had subsided, matters moved on much the same as before.

The damaging power of the psychiatrists that has no basis in any credible science has grown exponentially down these years to become a global epidemic. Psychiatry is the one branch of medicine that never has to prove its case and yet is permitted to wreak havoc on the lives of those that it most unjustifiably targets.

Today

So what has changed since the BBC broadcast the Panorama programme in 1999?

Today in the year 2007, the National Institute for Health and Clinical Excellence (NICE) through a documented process of utterly corrupt medical and political manipulation of formal due process in the production of the CFS/ME Guidelines is proposing to squander £300 million of British taxpayer's money on these very same psychiatrists.

If the CFS/ME NICE Guidelines are successfully clinicised, £300m of our money will be used to completely and utterly legitimise psychiatric abuse of patients.

Benefits and insurance payments will continue to be refused and inappropriate and harmful treatments administered. New patients naive to the politics will be duped into believing that it is all being taken seriously and that the Guidelines mean that doctors have accepted that 'CFS/ME' is real. As with many of us, they may not find out until it is too late for them that the psychosocial treatments of Graded Exercise Therapy/Cognitive Behavioural Therapy (GET/CBT) and antidepressants were a one-way ticket to permanent disability.

Conclusion

If I have not managed to convince you of the crying, nay SCREAMING NEED to get behind this legal action in some small way through the use of my poor words and hard work, then I am so sorry. I will have miserably failed patients and therefore failed you all. I will have specifically failed my child whose childhood and entire life have been absolutely ruined by the psychiatric lobby dicta that has damaged millions.

We have the opportunity to challenge the psychiatric lobby through the courts by Judicial Review. Not from a tin pot firm of back street solicitors, but from Saunders Solicitors LLP, one of the finest in the land, so familiar with the biomedical case.

We need to bury all of our past differences. We need the ME/CFS charities who have declared the CFS/ME NICE Guidelines as 'Unfit for Purpose' to contribute some of the money that patients have given them to support this case. To do otherwise is completely unconscionable.

I am happy to report that since the launch of this appeal on Saturday, pledges - including those from academics and doctors - have been coming in thick and fast. We need more. Much more. This matter is urgent. We need to obtain pledges of £20,000 in total by 5 November 2007 to bring the psychiatric lobby to account through the courts.

Because of the sensitive (and wonderful!) identities of some of the people making these pledges that are now coming in, One Click will specifically not be publishing any names. It is far more important to get the pledges in to fight this good fight than to give publicity to those good people who are making it happen.

Here are the documents that you will need to inform your decision.

How To Donate - Legal Appeal Instructions
NICE Guidelines - Judicial Review Legal Briefing
Judicial Review - Legal Appeal Information

I personally will not rest until justice has been done. Please join me and the One Click organisation in helping to make this happen. Please place your pledge.

This is history being made. Please try and be part of it.

Thank you for listening.

Jane Bryant
Director
The One Click Group

 

http://www.theoneclickgroup.co.uk

 

Please forward this onto as many people who maybe able to help us in our fight.

 

 

If Saunders Solicitors LLP and One Click obtain the required financial promises from you all needed to prosecute this case, we will proceed as indicated. At this happy time, you may either send cheques direct to Saunders Solicitors LLP or use the card facilities delineated on their website. All major Credit & Debit cards are accepted by this firm.

 

If we fail to reach this approximate financial target, then obviously we will have to stand down from legal action against NICE. You will not be called upon to honour your pledge unless we reach the critical mass of the targeted £20,000 needed to take NICE to court.

 

The case is ready to be worked up for the courts. The time to act is now.

 

Herewith a small sample of reading material to inform your decision:

 

The One Click Group Response – NICE Guidelines

http://www.theoneclickgroup.co.uk/documents/NICE/ONE%20CLICK%20RESPONSE%20-%20NICE%20GUIDELINES.pdf

 

Jane Bryant – Legal Appeal Personal Statement

http://www.theoneclickgroup.co.uk/documents/NICE/Jane%20Bryant%20-%20A%20Most%20Personal%20Statement.pdf

 

Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base.

http://www.theoneclickgroup.co.uk/documents/NICE/Inadequacy%20of%20the%20York%202005%20Systematic%20Review%20of%20the%20CFS-M..pdf

 

Nice Literature Review Critique

http://www.theoneclickgroup.co.uk/documents/NICE/NICE%20Literature%20Review%20Critique.pdf

 

Corporate Collusion, Hooper et al, September 2007.

http://www.theoneclickgroup.co.uk/documents/NICE/Corporate%20Collusion,%20Hooper%20&%20Williams.htm

 

NICE guideline on ME/CFS – ME Association statement

http://www.meassociation.org.uk/content/view/335/

 

Dr Charles Shepherd, ME Association, British Medical Journal, 1 Sept 2007

http://www.meassociation.org.uk/content/view/339/

 

25% ME Group Statement ON NICE ME/CFS Guidance Document, August 2007

http://www.theoneclickgroup.co.uk/documents/NICE/Charities/Final%2025pc%20NICE%20STATEMENT%20August%202007.doc

 

Mental Health Movement – Persecution of Patients

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/The%20Mental%20Health%20Movement%20-%20Persecution%20of%20Patients.pdf

 

 

We look forward to receiving the tangible support necessary to challenge the psychiatric lobby through the courts.

 

Many thanks for your anticipated assistance.

 

The One Click Group

 

 

***************************************
Please Network This Flyer

 

CFS/ME NICE GUIDELINES JUDICIAL REVIEW

* The CFS/ME NICE Guidelines have been produced by a process of documented unethical political and medical manipulation of due process.
* Please help us to challenge the atrocious actions of the National Institute for Health and Clinical Excellence (NICE) and the psychiatric lobby through the courts

What It Is: Judicial Review - CFS/ME NICE Guidelines
Who Will Conduct It: Saunders Solicitors LLP

(http://www.saunders.co.uk/)

What It Will Cost: Approximately £20,000
Pledges Due In: 5 November 2007
Court Application File Date: 22 November 2007

* See Legal Appeal Instructions

(http://tinyurl.com/39cgjm)

* See Judicial Review - Legal Appeal Information

                                     (http://tinyurl.com/34exk8)

* See NICE Guidelines - Judicial Review Legal Briefing

(http://tinyurl.com/357o37)

 

Email your financial pledge to One Click and Saunders Solicitors LLP.
Our legal fundraising target is eminently reasonable and entirely possible when addressed by the collective. It is that simple.

We look forward to receiving your tangible support for this legal campaign.

FORCE NICE TO DO ITS DUTY TO ME/CFS LABELLED PATIENTS THROUGH THE COURTS NOW!

 

Please Network This Flyer

***************************************

 

Arrrghhhh

So much to comment about, so much to write about in regards to the injustice in the world, but at the moment I just have to try and ignore it all.  I can't afford to get into any serious debates, as I may not be able to follow through with my arguments due to my health and I hate it to look like I pull out when the going gets tough in a debate and using my health as an excuse is not really an excuse - according to some (I haven't had that charge levelled at me, but I know someone who has).  I have one post which I really want to get back to about Israel/Palestine but I can't because I know how much energy it will take out of me.  I know that the world will still keep turning whether I am here or not, but it is still frustrating.

I was hoping to go to work today for a couple of hours, but it is not going to happen due to my health and new treatment regime - Bugger!

Anyway if the pain and other symptoms means I am heading in the right direction with my treatment, then it will be worth it.  Still frustrating though :)

No need to comment just letting it out!

Is it my imagination or is the font slightly different?  Probably just my mind playing tricks on me.

I thought this quote had a fair bit of meaning for me at present as I embark on my treatment for ME/CFS:

Having committed yourself to certain practices, be steadfast and never transgress the promises you have made. Let go of everything that could tempt you to do so and devote yourself entirely and single-mindedly to the accomplishment of your aims. For six years the Buddha did not waver from his practice of the meditative stabilization known as "Pervading Space." This meditation focuses on the fundamental nature of phenomena, which is present wherever there is space. Everywhere throughout space there are suffering living beings on whom this meditation also focuses with the compassionate wish to relieve their suffering and the loving wish to give them happiness. Thus it combines essential wisdom and skilful means.

--from The Three Principal Aspects of the Path: An Oral Teaching by Geshe Sonam Rinchen, translated and edited by Ruth Sonam, published by Snow Lion Publications

Hey guys and gals.  I couldn't get on Vox yesterday, I think it was an act of karma - Don't ask why, maybe it pays to always be polite and nice that is all that I will say. 

Monday afternoon I went to put a DVD in the DVD drive on my laptop and guess what the whole lap top froze, the drive doesn't work and it is getting fixed.  It is under warranty through Dell, but I couldn't be bothered getting fixed through them as I know what a pain it was last time and I really just wanted to get it fixed asap so I could watch DVDs from the comfort of bedroom which can be shut off to natural light.  Well the laptop still isn't back!  I thought they would just change cdrom/dvd drives and all would be sweet.  Not so it seems, there is a password to get into the hard drive and how would I know the password I never set one up - Arrgghhh!

So I am at present using the main office pc and it isn't very relaxing to use, especially at the moment because I can tell that the medication is kicking in as muscles are weaker today and getting sore.

So I ended up watching a couple of DVDs in the lounge on a bean bag.  The lounge area has quite a bit of natural light even with the blinds drawn so I had to be totally covered up, like a woman - under Taliban except I had gloves and sunglasses on as well.  I felt like I was going crazy and it was only day one.

I hope my laptop will come back today, plus it has got a lot of our business records on it which we need to access.

Anyway I wanted to say thank you to those of you who left kind comments on my entry about my new treatment.  When I retrieve my lap top I shall respond to your comments personally.

Bye for now and I hope you all keep well and safe.

 

The day is nearly here, tomorrow at 12.30pm precisely, I start the Marshall Protocol in the hope that it helps with my illness ME/CFS.

Before I started I had to get Quinn's wedding out of the way - done!

Wait for Ben's footy season to come to an end - done!

.
.
.
Go to Ben's footy presentation night on Friday night - done!

Go to Ben's basketball grand final tonight.

Get prepared for this treatment in terms of clothing and other sun and light protection - basically done.

So anyway tomorrow is the day that I start this protocol and there is a medication which I need to take and the treatment may have some side effects which may set me back in terms of energy and an increase in pain, but hopefully as time goes on things will improve.  There are risks to this treatment and thank you to all who have been concerned about me.  Yes I am nervous.  Yes I feel like I am entering some type of prison sentence due to the fact that I will have to be completely covered up when I am in situations where there is sunshine.  I will be wearing sunglasses whenever I am awake both inside and out.  To be honest I feel that I am setting myself apart from society, I can't explain it - but it just seems like some type of a prison sentence.

The hope is that it will improve my health in the long run and as the treatment proceeds the restrictions on my life will lessen.

Today I need to make sure I am totally prepared for the time a head - so I had better start getting organised and have another read of what I need to do. 

I have no idea how this treatment will affect me over the next months so if I am not around very much, you know the reason why.

Cheers Guys and Gals :)

 

In Memory of Casey Fero

ME attracts headlines for all the wrong reasons, usually due to ignorance, but also often due to manipulation of facts. A sad indictment of our times is the story of Casey Fero. Here we link to the the story of Casey's short life. Let's coordinate our efforts to gain funding for biomedical research to avoid stores like this.

From Co-cure -

By Mary Schweitzer, Ph.D.:

This testimony was given to the CFSAC (The Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and Human Services) on Monday, September 12, 2005.

Feel free to pass this along (uncut).

Mary Schweitzer.

------------------------

On July 4, 2005, sometime between 2:30 am when his mother kissed him good night, and 6:30 am when his father came downstairs, Casey Fero died in his sleep. His heart simply stopped.

Casey Fero was 23.

Casey was a charming, friendly kid with blue-green eyes. He was first diagnosed with CFS at the age of 9, then again at 15. He was plagued by headaches, cognitive difficulties, muscle weakness, and exhaustion. In addition to the symptoms of a serious illness, he had to endure doctors who did not “believe” he was “really” sick, and teachers who saw in him only a shirker. By the end of his short life, however, he was happy. He had just completed two years of community college and was looking forward to beginning courses at the University of Wisconsin. He had acquired a summer job. He had many friends, who came to his home for days after he slipped away to mourn the loss together. The family and Wisconsin CFS Association will honor Casey with a blood and tissue bank for CFS/M.E. victims. We will pass the flyer around at the end of this talk. [The flyer was posted to Co-Cure yesterday, and can be found at http://www.co-cure.org/flyer_WI.pdf . To contribute to the Casey Fero ME/CFS Tissue and Blood Bank go to <www.wicfs-me.org>]

In his mother’s words,

“Casey had bull dog determination. In his mind, he had overcome all illness and if he just worked harder he could do anything.... Interesting, how he died so well, with so much enthusiasm to live.”

Most people in this room are acquainted with Casey’s mother, Pat Fero, President of the Wisconsin CFS Association; Pat testified before this Committee about a year and a half ago. You may also have met his father, Bruce, and his older sister, Mikol Susan, when the Wisconsin group hosted the October meetings of the American Association for Chronic Fatigue Syndrome.

Pat has had CFS since before Casey was born. She and Bruce sought diagnosis and treatment for Casey, but as he passed into adulthood, he no longer had a doctor of his own. Even at the University of Wisconsin, there were no doctors who “believed in” the disease or, for that matter, really believed Casey was sick. Casey carved his own therapy out of over-the-counter and mail-order supplements such as powdered whey protein and Co-Q-10.

Seeing the supplements, the coroner originally told Pat that this would be their first “steroid” death. Even in death, the first response was that it could not be CFS, because CFS is not a serious disease.

Last Thursday, September 8, Pat received the coroner’s report. The University of Wisconsin forensic pathologist found that:

 

The pathologist was “shocked” at this finding.

Casey Fero died of Chronic Fatigue Syndrome.

Why? Specialists on NMH said they knew of no cases where someone died from that condition nor had there been reason to suspect carditis was involved in NMH.

Using an ultra-sensitive type of electrocardiogram, Dr. A. Martin Lerner of Wayne State University has found evidence that EBV and cytomegaloviruses in CFS patients has caused heart damage. I do not know whether this research has been replicated, but under the circumstances, it takes on a new importance.

There is evidence that HHV-6 can infect the heart. Other possible culprits include Lyme Disease, mycoplasma, and Chlamydia.

In 2003, Arnold Peckerman, Benjamin Natelson and others published their research finding that most CFS patients suffer from cardiac abnormalities [“Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome,” in The American Journal of the Medical Sciences 326:2 (2003): 55-60]. The cause was left to further studies, but Dr. Paul Cheney has suggested viral infection. Clearly this research could lead to an answer to Casey’s death, but it has no federal funding.

The harsh reality is that research on CFS, viruses, and cardiac abnormalities is under-funded, ignored, and at times outright dismissed by those charged with informing the public of the dangers of diseases.

However, if you turn to the Myalgic Encephalomyelitis (M.E.) literature in Great Britain, there is evidence of deaths in both adults and teenagers from sudden heart stoppage. Ramsay wrote about such cases, and in correspondence with Dr. Malcolm Hooper I was informed that he, too, was aware of premature deaths from heart failure. Dr. Hooper has long been studying the hypothesis that M.E. is caused by an enterovirus (such as polio and coxsackie). There is no comparable research on enteroviruses in the United States (unless you count the sparse literature on post-polio syndrome).

Is this the price we have paid because in 1988 we rejected, instead of embracing, the robust research programs and existing literature in the M.E. community? Had we built on these studies, instead of squandering our time on measures of “fatigue” and a plethora of studies of CFS as a “somaticizing” disorder, where might we be today? For the past twenty years, had we been looking at this as a disease rather than a psychological disorder, would we now know enough to have prevented Casey’s death?

And if we hadn’t hidden what we already know from the public, would Casey have had a doctor of his own, perhaps even one that would have looked into the condition of his heart?

Pat Fero came down with CFS before her son Casey was born. His entire life was lived under the shadow of this disease a shadow of widespread ignorance.

Why?

The pathologist was shocked to find heart damage.

Why?

What is the virus that the pathologists found? HHV-6? Mycoplasma? An enterovirus? Cytomegalovirus? EBV? Something completely new? Why is there no money for researchers studying these very questions?

We need the public to be told NOW that there is a serious disease out there, and that nearly a million people in the United States have it. They need to be told of the uncertainty about cause, prognosis, and cure. They need to be told what they should be tested for to rule out other diseases. And they need to know that patients die.

Two months after Casey’s tragic, untimely death, most primary care physicians know little more about the disease than they did on the day Casey was born. That is criminal.

One year after this committee sent a list of suggestions (as is its task), to the Secretary of the DHHS, there has been no [effective] response. That is also criminal.

What does it take to impart a sense of urgency to this task?

Does it take the tragedy of a young man’s senseless death?

Hold Casey’s memory high, like a banner. Take him to Congress, to the press, to the appropriate medical specialties. Let this be a turning point.

Casey Fero died too young. Do not let his death be in vain.

To contribute to the Casey Fero ME/CFS Tissue and Blood Bank go to www.wicfs-me.org

Thanks to my friend Rachel who also has severe ME/CFS for alerting me to Casey's death.

 

 

Hey there to all of you that have been worried about this treatment, thank you very much for your concern it is appreciated and I understand your concerns.  I may be putting off my commencement date until after Ben's football presentation night which is the 14th September, so those of you who are worried can stop worrying for a bit longer.  I would rather start the treatment asap, but I wouldn't want to miss out on his presentation evening.

I have not made the decision to begin this treatment on a whim.  I have had about 2 months to consider this treatment option and I have weighed up the pros and cons.  I am a pharmacist, so I do have "some" knowledge regarding medications and their side effects.  I know that this may not be the answer to successfully curing my illness, but it has more promise than anything on offer at the moment.  If some people with ME/CFS do not take risks with new research and treatments then research into a cure(s) cannot proceed and I for one will not sit by and just take this illness lying down (even though I quite often in reality do have to lie down).  This protocol is real medical based scientific research, it is not the latest "cure" that current affair shows promote.  If I had been diagnosed with cancer and I was told that I needed chemotherapy and surgery to have a possible chance of a cure then virtually no-one would question my decision to have the treatment and in fact most would think I was crazy if I denied treatment.  If I had cancer I would know that the next 6 to 18 months were going to be frightening and a real challenge and there would be side effects, but people would understand when my hair started to fall out or when I was extremely ill from the treatment.

In this case my hair will not be falling out, but I will have to make dramatic changes to my lifestyle and I will look strange because I will be covered from head to toe whenever I go out into the sunlight.  If I had cancer people would understand, but in my case why is it so difficult to understand.  People do not understand what I have been through, what I have lost, what my day is really like.  If a fair dinkum scientifically controlled treatment came along that may ultimately improve my quality of life, wouldn't I be a fool not to give it a try if I was in a position to try it. 

Should I just totally accept my life the way it is and not find solutions.  I am not naive, I know that this may not work and I have accepted my life to a degree, I have little choice in the matter.  But I also will try and find a solution to this problem if there is one.

I am grateful that I have a supportive partner - now, I didn't always.  We have been through some very tough times with our children, tougher than what some of you can imagine and just as he is being here for me now, I have and still are there for him when needed. If my Hubby wasn't around I don't know where I would be and I know in that respect I am fortunate.  I have a family who need me and I need them and I need to do everything that I can to be there for them and that includes finding effective treatments.

I don't expect anyone else with this illness to try the treatment, that is your own choice and it may not help in your case or even in my own case.

Anyway thank you to those of you who are concerned.  I am concerned too, but sometimes we have to take a risk and this is my next risk.  I will keep you updated.

Peace be with you my friends.

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