Why I am signing the petition to oppose MEGA

mega

MEGA has many facets: is it a thing of beauty or are its flaws too great?

MEGA is a proposed study into ME/CFS. There are good and bad aspects to it, so reaching a conclusion on whether to support it, or not, is not straightforward. But after careful consideration I have decided I am going to sign the petition opposing the study.

The MEGA alliance asked patients to endorse their study by signing a petition in support of them gaining funding to take the project forward (yes, there are two separate petitions). In the bit at the bottom were details about who was involved which includes the principal investigator of the PACE trial, and another researcher who has spoken highly of PACE and is running a trial similar to PACE in kids. Both promote a biopsychosocial (BPS) model of the disease.After some debate, someone launched a counter petition opposing the study. Right now what we have is a binary choice:

– Support the petition endorsing the study

OR

– Support the petition in opposition to the study.

You can of course do nothing but then you get no say at all, stuff just happens to you.

There are lots of potential problems with MEGA and these have been discussed on Facebook pages, blogs and forums such as Phoenix Rising. But these are the things that for me mean that I cannot support MEGA:

* Peter White’s involvement – he led the PACE trial. He promotes a BPS model of the disease that his own research does not support.

* Esther Crawley’s involvement – she ran a treatment trial of the Lightning Process on children with ME. She is now doing a graded exercise therapy trial on children despite there being concerns over the safety of the treatment.

* AYME involvement – Esther Crawley is an adviser for this organization so there is a clear conflict of interest. In my view AYME does a bad job of representing the interests of patients, one recent example I wrote about on my blog this spring.

I also have concerns over the definition that will be used to pick patients for the study, though I believe this may be something that those involved in the study may be willing to change, so it is not currently a reason why I am signing the petition. I don’t see any realistic prospect of them resolving the three issues above though, hence I will be signing the petition to oppose MEGA.

Some have pointed out that there are some good people involved in this study too, and I agree that is the case. There are researchers involved who have a track record of carrying out good quality science and I hope these people will do research into ME/CFS in some form. I want to find myself in a position where I can support them wholeheartedly.

I would like to specifically state that every patient I have interacted with wants these new researchers involved. The concerns are solely with certain individuals and organizations that I feel have let patients down over the years.

It has also been pointed out that as well as mental health questionnaires for 12,000 patients we will also get some omics data, and I think if genuine patients are picked this will be very interesting. The problem though is that patients are being asked if they want this study as it is and we are not being given a one or the other option. We are being told we get the good bits but must also accept the bad bits.

Given the new researchers involved are not considered experts in ME/CFS the study will be dependent on the advice of the so called experts White and Crawley. This could limit the good side of what we could potentially get out of this study and given its size and cost, if this study is not done properly it will set in stone an omics view of the disease forever. No one is going to be given funding to do something similar on this scale again if this study fails to show compelling evidence of something going on in omics. So the stakes are high.

Additionally, omics research takes time, a lot more time than it takes for mental health questionnaire and chalder fatigue scale results from the same study to be published and start being applied to all of us. If lots of people without ME/CFS but with mental health problems are entered into the study (highly likely based on the definition they tell us they will use) then a lot of those 12,000 study participants will demonstrate mental health dysfunction and not have ME/CFS.

It would probably seem quite reasonable to add these questionnaires to the study (it’s not hugely expensive). But off the back of the biggest ever study of mental health in ME/CFS (even though that is not the primary aim of the study) White, Crawley and other researchers who promote behavioral models of the disease will use this data to further research in that area rather than biological models.

So the question is, are you willing to take the risk of endorsing the bad as part of the deal to potentially get something good? Right now, as it stands, I cannot support it.

Some people who I like and respect a lot are in support of MEGA. I understand their reasons, and I too would love to support large-scale biomedical research into ME/CFS from some of the names involved in this project. I have found it very tempting to ignore the major problems I’ve raised, because of my desire for some of the big names involved in this project to have a crack at the disease. But I simply can’t do so under the present circumstances, I feel the downsides are currently too significant.

It was also very tempting to sit on the fence. This is not the same situation as PACE, for instance. This is not PACE 2. PACE was 100% bad, there were no redeeming features. MEGA, in contrast has both good and bad features. But I felt it was my responsibility to reach a conclusion and to voice it and my conclusion is that there is too much bad wrapped up with the good.

Also, as you can remove your signature from these petitions if you change your mind, if the issues blocking my support of MEGA are resolved — and I hope they are — I will happily withdraw my signature and support the study. That gives me the confidence to make a decision based on the information I have right now.

I welcome comment on my blog from both sides of the debate, it’s not something that patients should fight over, it’s OK to disagree on such important matters. There is no clear right or wrong, and even if we disagree on this I am sure we will continue to agree on a great deal else.

The Invisible Man: Isn’t It Time We Valued Men Too?

invisible-manMy three-year-old daughter was ill these last few days. What started off looking like a typical virus ended with my daughter in hospital and a battle under-way to lower a very high fever.

The difference in the way the hospital staff responded to me and my wife reminded me of what happened when my daughter was born. Below is that story, that I wrote at the time, but didn’t publish until now. My more recent experience shows that nothing has changed – men continue to be treated differently because of their gender.

Fatherhood: Misunderstood.

On the 23rd February I became a Father for the first time.  The greatest day of my life bar-none; the day that my only child was born.

So, what was my experience of becoming a Father?  Well, first we need to go back to the beginning.  Yes, I was there at the beginning, and still there 12 weeks later when my baby’s first growth scan was due.  I accompanied my wife to the Royal United Hospital in Bath, to have the scan.  I was not the only one, several proud Fathers-to-be waited with their partners for their first glimpse of their child.

Our turn came and we were called into a dark room to have the scan.  “Hello” said the nurse to my wife as she walked in.  She did not say hello to me, or even make eye contact.  In fact, she only made eye contact once, and that was when I asked a question during the scan, and she was unable to ignore me further. Off to a bad start.

Well, maybe this was a one off…Surely, this was a one off.

Over the course of the pregnancy we had many pre-natal appointments, and over half of the midwives we saw did not say hello to me. Neither did they make any eye contact with me. They basically ignored me, and made me feel unwelcome.

Only once did a midwife actually direct an unprompted question to me, while my wife was in the bathroom producing a urine sample. To my shock, I was asked how I was coping.  I was absolutely delighted to be asked. I smiled and had a short, but pleasant conversation with the midwife. This was eight months into the pregnancy.

When it came to the birth, I was acknowledged when we walked into the birthing unit.  I was asked to anti-bac my hands.  Then I faded back into the background.

The first midwife we saw ignored me.

The second was really nice and although she didn’t say hello, she did make eye contact with me and included me, somewhat, in the discussions. Long story short, my wife was a couple of centimetres dilated, and we were allocated a room, and I was allowed to stay with my wife.  There was a mattress on the floor for me, and a pile of sheets and a pillow.  I felt like a teenager staying at my friend’s house for a sleep over.  It wasn’t good, but I didn’t realise at that stage, that this was what the five-star treatment.

Within an hour, my wife had dilated to six centimetres and we were shown to a delivery suite.  Several midwives came in to see us over the next hour and only one in four acknowledged my presence.  Finally our allocated midwife (who had come in from home as cover) arrived and she not only acknowledged me but also asked my name.  I almost fell over with shock.  She was lovely actually, and looked after us until birth.  We did need some intervention late on and several doctors and other staff arrived to help with the delivery, including two men who were the only men we encountered the whole visit. Incidentally, they both said hello to my wife and to me, even shaking my hand.  Maybe men have better manners than women?

With everyone’s skill and experience at hand, baby was delivered at 05:33 am.

After the birth, I had to look after our new daughter while my wife was taken to theatre to have a lot of stitches (my daughter was not small).  My little girl is a little miracle and I can honestly say this was the best moment of my life.

My wife came out of theatre, and we were happy to be reunited on a shared ward.  It was noisy, as you would expect, but we didn’t care, we had a beautiful baby daughter to enjoy.  However, it wasn’t long before someone tried to spoil it.  “Visiting hours are 06:30-17:30 and Fathers go home at 21:00.”  “What?” I said, “I have to leave later today?”

I couldn’t believe it.  How could anyone ask me to leave my new daughter and her mother the same day of the birth?  Surely a Mother if asked would refuse – and quite rightly!  Why then, was I, the Father, being told I must go home alone?

Well, I wasn’t going to go. No way. I’m not one for conforming to unfair rules. If I was leaving it would be under arrest.

I’m not stupid though, I’m pragmatic; making a defiant stand is my last resort. My first plan was to put on my most polite manner and ask respectfully if there was anyway I could stay. I was told by the midwife that she would see if there was a reclining chair available for me to stay, though probably there wouldn’t be.

As it turned out there was.  Next to the bed in the ward was a heavy chair, which I was directed to. I was told that men weren’t allowed to walk around after 21:00 because women might not be fully clothed due to breastfeeding etc.  What kind of reason was that? Women, quite rightly, have the right to breastfeed in public, so why was this any different? I wasn’t interested in other women breastfeeding, I was interested in my hour’s old daughter. It did feel like a very anti-male rule.  I recognise that some new mother’s may be a little uncomfortable at first, but I don’t see why that should trump my rights as a Father. Would women put up with men’s rights trumping theirs? Quite rightly, there is a lot of campaigning for women’s rights being equal with men. But that’s the thing. Equal. Not more than. Not less than. Equal. Yes, men also have rights, though this isn’t something that gets much recognition in our modern society and I believe these rights have been eroded and continue to be. I wonder how men will be viewed by society when my daughter is all grown up?

Of course, being only interested in my daughter I mostly stayed put. But I did break the rules a couple of times to go and get my wife some water as the nurses failed to offer her any. I was just daring them to question why I was moving around.

Night time came and my wife and I did our best to sleep between looking after our new daughter.  I had to move the chair forward in order to recline it. It was extremely heavy and I couldn’t move it far because of my health issues. I simply don’t have the strength.  Worse though was that it did not recline flat.  It was not comfortable at all.  I was not offered a pillow and had to use my jacket.  I was not offered a sheet or blanket.  Surprising it did get quite cold through the night.

My personal child health record – ‘the red book’

the-red-book2

Dada?

We were sent home with a pack for our new baby, including a booklet called, “My personal child health record”, the ‘red book’ as it is often called, is a record of your child’s weight and other measurements, vaccinations and other important health information. It also has a section on child development.

Under ‘Your child’s firsts’ section, it contains a list of significant developmental events, including walking, smiling, laughs, and the first time they say “Mama”. But to my distress and bewilderment, the first time they say “Dada” isn’t even in the book!

I, the Father don’t even make it into the history book of my own child.  How do I explain this to my daughter when she grow’s up and looks through her own history and asks the inevitable question, “When did I say ‘Dada’?”

“Sorry sweetheart, you we never expected to.”

Child Guardians: Further Undermining of Parental Authority

In light of the Ashya King situation, many of us have asked ourselves, what would I do if I were in their shoes?
Well, if the government gets it’s way many more of us are going to find out.

During Prime Minister’s Questions yesterday, when the topic of the Ashya King fiasco came up, MP Alasdair McDonnell proposed amending the Modern Slavery Bill to allow for new state assigned ‘child guardians’ to be given the power to reflect the best interests of the child to all the relevant authorities and services. David Cameron agreed the government would look closely at the idea.

So why does this make me nervous?

The concern is that this would endanger parental authority which is the right of every parent – a right extending back to the dawn of mankind – but this core right is again at threat. Indeed, the argument can be made that it was erosion of parental authority that lead to this problem with the Kings in the first place, and the state introducing child guardians would simply make the matter worse.

The argument for it, and in which circumstances it might be justified

It is quite reasonable and correct, that the government take steps to protect vulnerable children: where there are reasonable grounds to believe that a child is at risk of abuse, such as sexual exploitation (the Rotherham scandal comes quickly to mind) or child-trafficking. (This is why some people believe child guardianship laws should be part of the Modern Slavery Bill).

The problem is how far such laws regarding child guardians (also sometimes referred to as ‘specialist independent advocates’) might go, and in which circumstances they will be used.

There are many cases of officials making false accusations of neglect or abuse against parents, often relating to sick vulnerable children. Tymes Trust, a charity which supports parents of children suffering from myalgic encephalomyelitis (ME), has seen 125 such cases to date, none of which have be shown to have foundation.

What happens if the child guardian’s view on a situation differs from that of the parent, particularly in circumstances where a parent is wrongly under suspicion. One can see how in such circumstances, a state assigned child guardian might have significant influence on outcomes which infringe upon the autonomous rights and responsibilities of the innocent parent. And this may well be to the detriment of the child, not to its benefit.

Why the State should only be a parent of last resort

There is no better guardian for a child than it’s natural parent, and the government should not interfere unless a child does not have a parent, or has parents that have been proven to be neglectful or abusive.

In such cases a child guardian would be coming into a picture where a child’s situation is without doubt, lacking, and as such there is a place for the state to provide some benefit to that child. But this should only occur in such certain cases because the government, by its very nature, can only do a bad job as a substitute parent. The reality is that the state cannot provide the thing that children need most: love.

From love springs everything else a child needs because it motivates a parent to act in the child’s interests in every area of a child’s life. A government can only ever be an artificial parent – it can provide some practical needs, but it fails immediately when it comes to love. It is akin to an artificial heart: better than none at all, but far worse than the real thing.

There are even questions over whether the government is able to deliver on the practical needs alone, as it often fails basics like protection; the Rotherham child sexual abuse scandal demonstrates serious shortcomings on a mind-boggling scale. If the government was a real parent it would have been locked up long ago for it’s many abuses.

A further important principle, is that children ought to grow up separate from direct government influence. Children brought up by parents are taught the viewpoint of the parent as a citizen; the most important aspect of all being that the government works for the citizen, not the other way round. The minute the government starts holding guardianship of children, that all changes.

I think the government’s choice of term, ‘specialist independent advocates’ is quite telling – they want us to believe they are independent, that it’s nothing to worry about. But that simply is not the case; it’s not the government’s fault, but there is no possibility of them being truly independent. The fact they exist at all will be as a direct result of the government making it so. And who will pay these ‘independent’ advocates? I’m sure the prime minister would chose to frame the answer as “the taxpayer,” but although it will indeed be us fitting the bill, it’ll be the state creating these new roles, not us.

Scotland’s controversial ‘named person’ scheme

Uh, honey, who's that guy in the grey suit?

Uh, honey, who’s that guy in the grey suit?

Alex Salmond’s administration wish to assign a state guardian, labelled as ‘named persons’ to each of the million plus children across Scotland, seemingly in breach of the legal rights of parents and children.

The stated intent is that these child guardians would safeguard against the occurrence of child abuse and these named persons would be health professionals from the NHS and council staff such as teachers and social workers. The key thing here is that every child would be assigned such a named person. We aren’t talking about those who have been proven to be at risk of neglect or abuse, or even suspected of it. You can be a model parent, and still the government will interfere in the upbringing of your child. And all it will take is one overzealous agents of the state to turn you and your child’s life upside-down.

State intrusion into family life aside, I can think of plenty of examples of specialists in these professions whom I wouldn’t want anywhere near my children. In all professions there are good apples and there are bad. But how do we protect children from the bad apples? A parent would say, “let me check that apple for you, make sure it’s not rotten,” and parents do this vetting whenever anyone has potential access to our children. Are we going to trust the government to make such calls for us? The kind of government, who’s doctors and nurses, social workers and teachers, decided Jimmy Savile was a good person to let around vulnerable children?

The Scottish bill was passed earlier this year, with the scheme due to be rolled out in August 2016. But the scheme is already being piloted in some areas, and parents in these areas have seen confidential medical records shared with children’s teachers, and instances of state officials holding secret meetings with sick children to determine treatment, without consent of parents.

Joining parents, a number of organizations (including the TYMES trust) are opposed to it, and have raised more than £30,000 so far, to make a legal challenge in court. The case is spearheaded by the say No to Named Persons (NO2NP) campaign group.

Sadly, I’m not sure a ‘Yes’ vote for Scottish independence would be enough to stop England from following Scotland’s bad example. Either way, I’m right behind the NO2NP campaign because I think state guardianship of children, wherever they are, is not in their best interests.

European and UN human rights

The basis under which this is being challenged is that child guardians would breach the rights of the parent and the rights of the child.

Article 5 of the United Nations Convention on the Rights of the Child (UN-CRC), says, “States Parties shall respect the responsibilities, rights and duties of parents or, where applicable, the members of the extended family or community as provided for by local custom, legal guardians or other persons legally responsible for the child, to provide, in a manner consistent with the evolving capacities of the child, appropriate direction and guidance in the exercise by the child of the rights recognized in the present Convention.”

Article 16 of the UN-CRC says, “no child shall be subjected to arbitrary or unlawful interference with his or her privacy, family…” and that, “the child has the right to the protection of the law against such interference or attacks.”

And Article 8 of the European Convention of Human Rights (ECHR), states that a person has a, “right to respect for private and family life.”

It seems quite clear that parents and children are protected by these laws, and their legal rights may be violated by the government introducing child guardians. But this wont stop the government trying, and we must push back and say no because rights are like muscles, they only stick around if you exercise them.

 

Photo copyright TempusVolat. Creative Commons use.