Monthly Archives: June 2013

Ramsay’s Disease – the efficacy of Evening Primrose Oil and the Exercise idol (pt2)

Ramsay’s Disease is authored by Dr Simpson who has done years of research and Nancy Blake who has ME.

(Ramsay’s Disease blog entry 1)

Dr. Simpson points out the various studies that show the efficacy of fairly high doses of Evening Primrose Oil in enhancing the fluidity of blood flow.  Fish oils had also had some success, he says.  There have been studies showing that high doses of EPO can assist women with premenstrual tension. It has also been shown to improve luteal phase defect probably because of it’s action on prostaglandin. I already knew about the latter studies and this is why EPO made it into the BNF a few years ago – don’t know if it’s still there. Simpson doesn’t mention luteal phase defect, but then he isn’t writing about fertility problems, he’s interested in blood flow and capillary size in people with ME.

He proposes that “people who develop ME have the anatomical feature of smaller-than-usual capillaries in those parts of the body which become dysfunctional and manifest symptoms…” which seems fair enough,and might go some way to explain why more women than men are dx with ME, (and that’s before you take the different hormone balances into consideration) and then he continues with “after exposure to an agent which initiates changes in the shape populations of red blood cells.” And that leaves us with the mighty question what agent?

I don’t remember being ill before I became ill (if you get me) I didn’t have the classic “flu that never went away”. I didn’t even have the equally common “virus that went away and came back and then never went away” either. I was fine. Then I couldn’t walk and was in terrible pain and other weirdness; but nothing obviously viral.

If Simpson is right and small capillaries are part of the problem then that makes me wonder how many of us were harbouring the problem until something (I suppose the “agent”) triggered it. I’ve always had what adults around me called “poor circulation”. It means I tended to have colder extremities. But that was it. Nothing like the Raynaud’s I now have or the POTs rash and blood pooling or the purple feet and knees, as adverts of my dysautonomia. That’s new. But if I always had circulation problems then that would tick a Simpson box about overly small capillaries.

All of this would lead to poor profusion and explain the muscle fatigue – moving from aerobic to anaerobic at the least provocation; raising lactic acid and of course leading to a crash (PEM/PENE)

Simpson does not claim that taking Evening Primrose Oil could or will cure ME. He’s aware of the complex and just plain nasty side of the disease, but EPO could help blood flow and this should lead to some alleviation of some symptoms.

The lack of acknowledgement of much of the research and complete lack of follow up is frustrating.

At the end there is a discussion of some of the deliberate hurdles and obfuscation that has been put in the way of a proper diagnostic criteria and treatment plan.

As the author notes, if those people who came forward to take part in the much discredited PACE trials were excluded if they suffered Post Exertional Malaise (PEM) sometimes called Post Exertional Neuro Exhaustion (PENE) were excluded from the study then not one participant actually had ME! (cf loc 5185 90% Kindle edition)

The book ends with a very good commentary by Nancy Blake whose professional background is in psychiatry. She points out that a tick box approach to diagnosis is not a good way for medics to decide what is happening or how to help a patient. She also, rightly, points out that labelling people with ME as having a psychiatric disorder without any history of precipitating factors is not going to be accurate.

Misdiagnosing people with ME as having a completely made up dx of Somatoform disorder is deeply unethical. Ms Blake doesn’t challenge the existence of Somatoform disorder in her criticism of it’s use to label people with ME, but frankly as there is no evidence the disorder exists at all, you have to question the motives of the doctor who uses it.

She goes on to note how research is heavily hampered by the downright silly mess of diagnostic criterias available some of which, such as the most ridiculous one, the Oxford Criteria do mention PEM but don’t  have it as required.  This means lots of non-ME are misdiagnosed with ME/cfs as well.

She writes:

Fighting against this illness in the way that medicine and convention expect us to will ensure that we lose not only the battle it also the war – in the short term, we will get worse. In the long term, we may end up among the 25% who are completely disabled.”

I have to agree. I did what I was told at the beginning of all this and now I am much sicker, and more disabled than I think I would have been had I listened to what my body was telling me. There are so many other patients who tell the same story.

Further reading

A story in the Telegraph about a woman who died from complications of  ME

Reasons to home educate

P1010037A friend posted a link to THIS ARTICLE which notes the massive rise in homeschooling families across the states of America. The article suggest the 75% rise is due, largely, to dissatisfaction with the school system there.

I don’t know what the figures are like this side of the pond (I think we learned in the Badman Balls days that statistics were completely arbitrary and meaningless, because they weren’t accurate) but I do remember that reports went out a few months after the election when Badman and Balls were no longer able to come after us, saying, registered home ed families in Oxford and someplace else had risen by 50%. It was almost as if the negative publicity the media had tried to give us had backfired and simply made more people aware that home education was a good choice for their children. The 50% had to be children taken from school and therefore registered with the LA and didn’t include those families who had never sent their children to school.

If you want to home educate in England and Wales you do not need to be registered with the Local Authority. However, if you have removed your child from school you will need to write to the head and s/he will pass this information onto the LA who will automatically register your child. So, as we pulled two children from school we are registered, whereas many of our friends are not. On an even weirder note, in some families one child could be registered and LA loose the paperwork so that other children aren’t. It happens.

A family can choose to register with the LA if they want to, but as there is little to no support from the LA there doesn’t seem much point, and therefore very few families bother.  Nevertheless, despite all the information and legal niceties, far too many HE families report threatening behaviour from the LA person- usually a welfare officer. We have been very lucky in that the LA people with whom I have dealt have been respectful and made the effort to get to understand what HE is. For friends who come under a different authority that has not been the case. There’s been some rumblings that the Local Authority people want to “build bridges” with home educators and in some areas those bridges could be built. Sadly, when yet another family is door-stepped by a Welfare Officer and where “safeguarding” gets bandied about for no reason, those bridges soon tumble. (Part of this, it seems to me, is rooted in the ignorance of the EWOs involved who must think the propaganda about “isolation” is true and come a cropper when some new and apparently green home educator gets help because she knows other more experienced families).

One of the major reasons home educators get cross with poor behaviour from the LA is because so many of us saw our children failed miserably in school – which is under the remit of the LA.

I know many home educators who have chosen this route for very positive reasons. They love the way they can tailor the work to the child and the choices of method, philosophy and resources that are available to home edders that aren’t available in schools. We see our children grow and explore and have time to just be. We see them learn to be with their siblings, setting up close relationships for life. We see their enthusiasm for learning and we can prioritise things properly, adjusting them as necessary.

We are also home educating at a time where resources are abundantly available online or via the post and many of those resources are free. I think many of us who have been doing this for some time have made free resources available and have benefited from other families’ freebies.

Unfortunately there are many negative reasons for home education. Children who are bullied, ignored, too sick, and/or where the school won’t or can’t handle basic medication, or with shamefully unmet learning needs, are removed by parents and successfully home educated. The question that some of us are asked “Do you think you can do it better than school?” has to be answered with a resounding “Yes!” In my case it was more “I couldn’t make it worse…” but now I just know I am offering the children something positive that isn’t available in school. When you look around nearly all of us have at least one child with a “special educational need” (SEN) and yet studies show that home educated children generally out perform schooled children in educational and social testing.

I do love seeing my children enjoy learning and not being ashamed of wanting to learn. I also love that they can have difficulties in certain areas and not have to be ashamed about that either. I love the different things we can go off and study as we aren’t tied into a curriculum. If they struggle with something we have the time and the genuine love to work with it until they are over the obstacles.  

I can tell when one of them is too tired or has simply lost that concentration and can send them to do something else, take a break or just make a cuppa while they recharge and then they can come back to it fresh. Sometimes we decide today isn’t going to work so we can put the lesson off until another time.

I love the way the children at Home Ed Group work together. Ages and special needs of all kinds are unimportant – everyone chips in. If problems occur the mums can deal with it straight away, nipping things in the bud and helping the children remember how to behave properly. We aren’t saints, and neither are our children – all the more reason to be there to deal with bad behaviour straight away.

One of the other major advantages in home education – at least for us – has been helping the children to learn independently.  It’s something I remember someone from the Open University saying about home educated youngsters who took on OU causes under the age of 18. They could already work independently and so could get on with things without the tutor having to say when to open the book and how many pages to read.

Home Education isn’t for everyone. It’s not a panacea against all educational and family problems; but the fact is, it is good for many families and I suspect would be better for a lot of children who are currently being failed in school.

Studies that have been done make interesting reading in that they show children from poorer backgrounds who are home educated do as well as children from so-called “middle class” families.  Schools can’t make this claim sadly.

Home educating is hard work, and there are times when I wish I wasn’t doing it; but overall I think it’s working well for us and most importantly, it’s working very well for the children.

Further reading

The Pagans Are Happy to Socialize Your Children

Home Education; my child hates (insert subject) In our case it’s maths.

A couple of years ago I remember listening to a homeschooling conference speech in which a veteran homeschooling mother spoke of the dangers of forcing a child to stick with a curriculum that isn’t suiting them. She had chosen a Maths curriculum for her son, in line with one used by other families in her homeschool co-op and he hated it. Thinking that he needed to continue with it because the lessons were done as a group she kept him at it. In the end all she and her son had to show for it, was his utter hatred of maths. Not a good result.

math-memeNot long before that I had taken Ronan off Math U See and he was doing Life of Fred with some Mathematical Reasoning. Then I reintroduced him to Math U See and all went well for a while.

We’ve hit the arithmetic wall again. I’d been working with him on it and then I even did the notetaking with him telling me what to write. Nothing was working. He was continuing to do Life of Fred and some other bits of maths but the core was the dreaded Math U See.

So, I’ve taken him off MUS again. I then spent an afternoon trawling curriculum sites and website. I’ve printed off some Grade 3,4 and 5 worksheets to see what would happen.

Without telling him what I was giving him I gave him some worksheets at Grade 3 (he is at the end of grade 4) which he did  in a couple of minutes. So I’ve given him end of year grade 4 test papers which is is coping with fine. Obviously his ability is “at grade” for want of a better system of assessment. He’s even done some MUS problems (Shh! Don’t tell him) without any problem simply because he didn’t know they were MUS. Honestly!

As we come to the end of term I’ll slowly get him up to grade 5 papers and see how he does. I think when we come back in September he will be fine starting his Grade 5 on Grade 5 level maths.  Then I’ll rethink his curriculum from there.

I think I may have to just accept that while the girls are happy with MUS that it just doesn’t suit Ronan. It’s more important that he learns his maths and gets on with it, than he uses the same curriculum as the girls (and his friends).

This site is good Mathgametime.

And this UK based site for Maths innovation (menu list)

Math Mammoth is well known.

I am also looking at Right Start Math but I don’t think we’ll use it as it doesn’t really go high enough as yet – although the new geometry course does look very good. Going to do the placement test though after he’s finished with the sample worksheets and see.

I think I might get some more maths from The Critical Thinking Company for him.

UPDATE – more sites to consider.

Teachingtextbooks 

Mangahigh haven’t checked this out yet.

 

Ramsay’s Disease – ME as it was before the CDC’s politically motivated CFS dragnet was thrown.

I have a dx of ME, but I don’t really know if I have ME. The doctor who dx me did so by accident when I went to see him about the worsening symptoms of my already dx Fibromyalgia. I was getting sicker and sicker and wanted to know how to stop it. He was a truly nasty piece of work. and I came away, not only with no answers, but no hope. Thankfully I’m a tough ol’cow and I bounced back. But I am still left with the question; do I have ME? And this is coupled with the question, “What is ME anyway?” Ramsay’s Disease – Myalgic Encephelomyelitis and the Unfortunate Creation of CFS by Simpson and Blake is a good insight into the research Dr Melvin Ramsay  and Dr Simpson had carried out in England up to and beyond the Royal Free ME cluster outbreak of 1950. His work of blood 000-3d-model-1rheology showed very clear signs of a good biomarker test for ME even back then. His work, however, was sidelined as the psychiatric lobby, linked to the American Insurance Industry and British Government’s welfare cuts took over. A brief but accurate timeline of events shows some of the bizarre and unprofessional behaviours from members of the CDC in the 1980s but also notes a strange attack on people with ME by a couple of pyschs in 1970 (McEvedy and Beard) who tried to insist the Royal Free Hospital cluster and other cluster outbreaks of ME was “mass hysteria.”

♠ ♠ ♠

Nancy: Appropriate treatmet for ME should include a prescription for rest immediately upon becoming ill…” (Kindle loc. 3454 60%)

The understanding that patients with ME did(do) better with enforced rest at the beginning of the illness has been repeated over the years, most notably by Dr Nancy Kilimas (an HIV/AIDS specialist who has done lots of work on ME, especially when she noted that her patients with ME were as sick from the start as her end stage Aids patients). Even anecdotally I can see people with ME who have gone into remission after having gone to bed when they became ill. Research into patients who have gone into remission is sadly lacking; but then research into people with ME is sadly lacking altogether.

Studies suggest that those who get ME younger have a better chance of getting good remissions. Sadly this simply isn’t the case for many children and teens with ME and some of the deaths from ME are in those young ones.

The central theme of this book seems to be the blood rheology results showing that people with Ramsey’s criteria for ME have misformed erythrocytes (red cells) which in turn leads to poor profusion, especially in the brain. The problems with blood flow offered a good explanation for a lot of the memory, language and other neurological symptoms of Ramsey’s ME. Strangely (or not) Simpson a researcher in this area had problems getting his blood rheology papers published despite the slides showing the cup shaped cells. He found that editors of medical publications couldn’t accept red cells could change shape (leaving me wondering what they made of Sickle Cell and Thalassaemia).There have been some papers published on this subject not related to ME Considering the appalling quality of much of the so-called research into CFS and/or ME that is published, it’s a bit odd that Simpson’s papers weren’t published.

More recent findings back up Ramsay and Simpson’s blood findings and this coupled with studies showing small capillary problems points right back to their work again.

Having reached the part in the book where patients climbing three flights of stairs to reach the doctors office and then having very cold hands and blurred vision, I am reminded that all ME patients are not the same. There’s no way I could make it up three flights of stairs!  He goes on to say

Although much was written about “autonomic manifestations”, in the terms of Ramsay’s criteria dysautonomia would have excluded a diagnosis of ME – but if there were a systemic problem of blood flow it could anticipated that capillary blood flow in the nerves of the autonomic nervous system would be impaired.”

I am not sure whether the author is saying that those of us who have a dysautonomic dx can’t have ME or whether the blood flow problems found in Ramsay criteria dx ME patients lead to ANS problems anyway so ME and dysautonomia go hand in hand. There’s a lot of us with dual diagnosis – and getting diagnosed with any dysatonomia is difficult because most doctors haven’t a clue it exists or what it is.

Recent findings in research into women with fibromyalgia seem to back up the blood flow findings of Simpson et al (this report in Medical Daily on the research is clear – you can mute the annoying advert in the sidebar. You might also want to skip the ridiculous cliche “patients aren’t lying after all-shock” introduction.)

I’ll write more later. It’s time for a cuppa.

Further reading:

Erythrocyte Rheology article in BMJ (opens Pdf)

The Fish-Dish (my daughter’s observations of my aphasic moments) (Nb. Please go to the toilet before reading this).

How to commit a mortal sin.

It’s the birthday of St. John the Baptist today. He was to be the last of the Old Covenant prophets, pointing towards the coming of the Lamb of God who brings about the New Covenant.

220px-Jacopo_Pontormo_031According to a small t tradition I have heard recently, John was thought to never have sinned. He wasn’t immaculately conceived; he was conceived with the missing grace of Original Sin, but he never chose to do wrong.  I think this tradition comes from some of the Fathers.

John called people to repentance and then he offered them a form of baptism that allowed them to make a sign of how sorry they were and the intention of starting again and trying to live a better life. This was not the Sacramental baptism Jesus commanded His apostles to perform, but it was a well recognised symbol in Jewish tradition.

John spoke out for marriage and against the adulterous and unlawful marriage of Herod and Herodias. He was arrested, imprisoned and beheaded.

The question seems to come up quite a bit about how many people are really in a state of mortal sin, when they commit mortal sins. Was Herod truly guilty?

Well, it depends. Committing adultery and/or entering into an unlawful marriage is grave matter – that is, it’s very serious. There are many things that are grave matter, that can remove the grace God has put in our souls.

Herod would have needed to know his action was sinful. Now, Herod may not have known, but then John told him, so then he knew. If he knew and committed the act anyway – then that’s a state of mortal sin.

So, in a nutshell; it has to be grave matter – that is, something seriously bad.

The person has to know it is grave matter

And they do it anyway.

“Aha!” says Clever Clogs, “I see the ‘Get out of hell free’ card. If we don’t know it’s bad, we can do it! WHoo-hoo!”

Not quite.

You see while there is such a thing as invincible ignorance – it’s not as easy to be invincibly ignorant as Clever Clogs might like.

First of all there’s the natural law which is written on our hearts. This means that deep down we know that killing the old lady next door, or an unborn baby is a very bad thing. We can ignore the feeling but it’ll be very difficult to explain to Himself that you didn’t know, and couldn’t know at all.

On top of that, most people have access to information that can form their consciences and therefore have an obligation to form their consciences in line with God’s will.

Some people genuinely couldn’t know that something is bad and they do it in genuine ignorance. We can’t say who or when, but God knows. All we can know, for ourselves, is that avoiding the truth isn’t invincible ignorance, it’s willful ignorance and that isn’t a good idea. Doing whatever you like and avoiding anything uncomfortable is a very dangerous way to be a Christian.

So, my advice about hell – don’t go there.

Friday Freebies; Literature and book reports.

frugal friday freebiesI am doing some searching and planning for the Autumn term in Sept.

Book report for The Wolves of Whilloughby Chase Edhelper does have some basic freebies but you’ll need a paid sub if you want the more detailed stuff. Prince Caspian

The Hobbit Unit Study Looks good and it’s free.

Book report printables from Kalie’s hard work at That Resource Site She has a whole load of printable resources

I’ve also signed up to Jump Start. it’s free.

There’s this one here for grade 1

And I’ll still be using the free stuff from STARFALL

I want the children to do more reading and writing over the next academic year, but I don’t want to put them off the books they read by having them dissect them.

Also these free Spanish lessons look good SALSA. Each episode has a pdf download in English and Spanish and an activity sheet. Going by Ep 1 I think they are following full immersion theory of learning a language. It is clearly spoken and looks fun. (h/t Freely Educate)

I can’t make any promises, but over the Summer hols I hope I’ll find the umph to make some story reports and book studies. If so, I’ll send them to Kalei and you’ll know about them 🙂

 

I’ll probably combine it with some copywork.

Ronan cooks his first meal.

Ronan wants to be a baker. He can already bake some pretty good cakes and I have to confess his gluten free productions are better than mine ever were. He is definitely the lead gluten free chef in our house. He has been asking for a while to be allowed a night when he cooks.

P1020718Iona is the cook now. I can’t stand up long enough, or remain safe, to cook a meal any longer. Ronan has asked for Wednesdays to be his night. He cooked his first full meal for five. He made sausages, potatoes and beans. I didn’t help at all. I only went in to the kitchen now and then and made suggestions. He did all the work.

This was more impromptu than planned, but I think we could do some menu planning and he can have a go, choosing his own recipes. His knife control is pretty good – needs some work – but good enough.

He can learn menu planning, budgeting and nutrition  as we go along.

This is a very important skill. It’s one Iona has learned as she went along and one that stands Alex and Anna (his wife) in good stead now that they are making a home for themselves.

It’s sadly rare these days that youngsters can cook, and shamefully more studies are showing that children don’t even know what basic foodstuff is. Learning about food and cooking has to be one of the most important life skills we can offer our children.  They love it.