Esther12
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Following on from a discussion here: http://forums.phoenixrising.me/inde...lgium-doctor-after-failed-by-nhs.32918/page-2
that really moved off the topic of the thread with this post from @Jonathan Edwards :
that really moved off the topic of the thread with this post from @Jonathan Edwards :
I agree, I suspect with everyone here, that any suggestion of imprisoning a mother seems to indicate that the medical and legal systems have totally failed this family. But things can be complicated and the interests of the child are not only, as someone said, the only interests of the court, but also the only medical interests and I think for us bystanders the only thing that matters too.
The social services in the UK are under constant criticism for allowing children to suffer because of the actions of parents. Some die, some suffer FGM, many are abused. This case would seem to be quite different, but I am not sure it is so black and white, at least on the hearsay basis we have which may turn out to be a scam. I would like to see some balanced argument on PR. Some good points are being made but I think some people are also being dangerously naive and simplistic.
What are the risks involved in taking these hormones? As I understand it there are two possible situations. One is that corticosteroid and/or thyroid hormones are taken in a small supplemental dose that will suppress normal production and therefore have no significant continuing effect. The other is that the doses are big enough to produce a physiological effect which, unless there is pituitary, adrenal or thyroid disease, will produce a hormone excess syndrome.
Note that in the first situation the person will feel 'improved' on starting cortisol, thyroid or oestorgen. All of these in different ways produce a 'lift' of a sort. That lift will disappear as soon as the gland is suppressed - maybe within a few days. But if the person stops the treatment they will feel lousy for a while. So 'improvement' on taking these hormones and 'worsening' on stopping them will happen to anybody who is down - and will have absolutely nothing to do with the hormones being useful for any disease they might have. Long term treatment will achieve nothing at all. The temporary effects will occur in people without ME. The situation is probably a bit like smoking or drinking coffee or alcohol or taking valium. Selling something that you get hooked on for reasons that have nothing to do with an illness may be OK for adults and it may cause no harm at this level but for most of these things we have laws protecting children against foolish usage. Note again that by definition at this level even if the person has ME and hormones turn out to be good for ME they will get no benefit, since gland suppression ensures that their hormone levels over time are essentially unchanged.
If the dosages are high enough to have a genuine effect on long term hormone levels there are serious complications to consider. For corticosteroids we have diabetes, juvenile cataract, bone loss, weight gain, skin atrophy, scarring acne, hair loss, coronary artery disease, etc etc even with doses that raise levels marginally. For thyroid hormones we have bone loss and at higher levels atrial fibrillation with cerebral embolism and stroke. Oestrogens have all sorts of effects too.
All of these things can be, and have to be, discussed with adult patients, who can make an informed choice. Children are not in a position to make an informed choice. And there is almost certainly no such thing as 'a little extra hormone being helpful' since, as indicated all that happens with a little bit is that the glands get suppressed and you are just left with the initial lift and the come-down when you stop that keep people taking these things.
Dr Hertighe appears to belong to a group of prescribers who feel that hormone deficiency can be diagnosed at normal test levels. My question would be how that diagnosis can be made. If it is on the basis that people feel a bit better when given a small dose of hormone, from what I have said above this would seem to be invalid - normal people or people feeling down for any reason may feel better for a brief period. If hormones are prescribed to a child with normal tests I think that does raise very serious legal and moral issues.
And what I come back to is that PR may unwittingly be party to this in some cases. PR is a fantastic place for swapping ideas on how to study the disease. It is a fantastic place for airing legitimate concerns about health care system failures. I am totally with everybody on that. But it can also be a free advert for people who are selling potentially dangerous therapies to people who are not in a position to protect themselves. A line has to be drawn somewhere. Recently people travelling to China to get 'stem cell transplants' have died from botched procedures, as I understand it. Serious side effects have occurred even with well intentioned treatments, with fully proven primary efficacy, given in public health care systems. That is why Stevie Wonder was blind.
And I fully appreciate the damage that can be done by 'well intentioned' health care workers misled into thinking they are doing good when in fact it is plain for everyone to see that they are doing harm. I had to take my wife away from one psychiatric unit and find a pretext for having her admitted to a completely different hospital in order for her to get the treatment that kept her alive. I am absolutely in tune with these concerns, I assure you. But I do sense a double standard on PR. It seems to be OK for well meaning chat between patients to function as free advertising for very dubious and potentially hazardous practices while it is not OK to mention that common sense sympathetic psychological support, optimism and encouragement, of the sort that Nigel Speight might advocate, might be part of getting better. I have heard people talk of 'top CFS/ME doctors' on this list and sometimes when I look them up I get the impression of a second hand car salesman selling joke science. I have personally only identified one person I can be sure is a 'top doctor' in this field - simply on the basis of his humility - and that is Dr Speight. I wonder what he is thinking of all this...