A blast from the past: CDC press conference 2008

[Ahopeful]

Hi folks,

I was just reading up on a transcript from the CDC press conference of 2008 announcing the morgs study.

CDC Press Briefing Transcripts January 16, 2008

Interesting that back in 2008 they were already receiving increasing enquiries, we can only presume that has continued..

Three long itchy years later, and we're still wondering...

Anyway. It may be better than nothing (well I may regret saying that pending outcome..). In the UK, the dept. of health is doing absolutely nothing. Zip.

[skylark99]

Thanks, ahopeful, for bringing this up.

You're right about that; the dept of health is doing nothing. Even though the CMO at the time, 2008, acknowledged M and the cdc definition of it; openly admitted they were happy to wait on the cdc and see what findings they came up with (poor and crafty excuse: waste of money to duplicate research).

Ah, but then, the health dept really does seem to be doing something.....

Although they stated in their 2008 letter that they appraised docs of M and advised them to assess each patient on an individual basis.... strangely, no docs are actually assessing or addressing the symptoms in patients presenting with them.
....... what they are doing is as soon as you say that you itch or have other symptoms (they they see are not scabies), they label the patient as a candidate for mental health services. This remains in the medical records, is alluded to but not said outright, but sets the patient up for being fobbed off each subsequent time they approach any doctor for help with the symptoms. A kind of marginalizing, a way to hush things; no one is going to believe a nutter, right?

12 doctors later......... and still the same run-around.
I now have copies of all medical records, except the last set from the past month; those I am getting now.
Are you on the Spine (computer records data base), or did you opt out?
I opted out, but am puzzled why the last doc was reading my records from his computer. I intend to find out how and why, and if the legislation has changed since the opt out option.
Something is very very wrong with all of this. No cases of M diagnosed in all of the UK, all diagnosed as dop. There simply cannot be hundreds of people in the UK who have suddenly developed dop within the last 4 years! Internet neme? No way, some of these people never had or used the internet in their whole lives.

Buffalo chips. (An Indian expression meaning male cow pattie.)

[JimDoe]

No way, some of these people ever had or used the internet in their whole lives. Qoute from Skylark.

Now that is as right as I,ve ever heard. I shame myself for having not thought along thoses lines before. Thank you.

[Ahopeful]

Skylark- Perhaps I've made a mistake but I have not opted out of the computerised records yet. Not sure if it is too late.
My GP practise uses a computer system but not sure if it the data has been carried over anywhere on the network yet.

Anyway you are quite right, this is similar to my experience. The DoH cannot simply say they are waiting for the CDC - what kind of a response is that!? If there is a potential infectious disease running rampage in your country do you ignore it and wait for another country to investigate? Lucky they didn't do that with vCJD - but then just how long did that take to get actioned...

At least there is a need for a central surveillance for GPs to log potential cases and get some kind of handle on the size of issues. Plan on stepping up work in this area.

[skylark99]

In some cases, Surgeries did not send letters to patients informing them that they had the option to opt out. The Government wrote into the legislation that they were supposed to do this, I think. (If you didn't you may not have known. You may also have been so ill that it passed your radar and you did not think of it.)

That happened where I was registered; no patient letters sent out. I brought it to the attention of the Practice Mgr (PM), and she was not pleased. I do not know if they ever sent any letters to patients about this, I suspect that they thought it more cost effective to just upload all their data onto the Spine. That surgery has had some financial difficulties.

It wasn't surprising that all my troubles began at that surgery, and around this same time, as well. It has had a catalogue of patient complaints, 2 gps with pending malpractice or negligence suits, and ad infinitum.

I opted out using a pre-formatted letter provided by some organization (Liberty, perhaps? not sure). On the face of things, the response from the PM was gracious, but after getting copies of my record, noted that the comment in my files was "refused to have records added to the Spine'".
Not quite the same thing, is it?

I was careful to copy my opt-out letter and their response of receipt of it and to file them away.
These are documents that I will take with me when I investigate if my records are on the Spine at the moment.

It is possible that the legislation has changed since I opted out, though I doubt it. Surely, I would have been informed? And I find no information on the nhs website that indicates a change in this data protection legislation option.

I just find it curious that one doctor I saw recently was viewing on his computer at a copy of a letter to written by a consultant to a previous GP... A letter that was written after I opted out of having my records added to the Spine and since I have got Morgellons symptoms. I had to hunt down that letter, and finally found a copy of it in my paper files in the local hospital. It shouldn't have been there, it should have been in the Lloyd George Cards' from the surgery where I was registered at the time. Later, I found another copy of it in the Lloyd's which was not there the first time I looked at them. All sort of curious, really.

The records office manager (and all other personnel, as well) at all nhs hospitals are Caldicott Guardians, charged with protecting patient data.
I will find out if the legislation has changed and post what I find out.

Anyway this whole labyrinth of getting ones medical records here in the UK is very complicated, and I found it practically a Sixth Form Course to learn how to do it and what my rights are.
I will make a thread about how to do it, and post it here in the forum when I have written it up and found all the links to the various pamphlets and etc.
I have started this, but making it simple is the rub, innit?

========================================
What do you mean the DoH cannot simply say they are waiting for the CDC??

That is exactly what they have done and are doing. Jo has it in print on the M-UK site.

Who exactly does the CMO answer to?
No one. I think they are accountable to the MP's and HoL's but only as far as legislation is concerned. If you were to challenge the inaction thus far seen, you would only get a response that "there is no evidence to suggest that this is a health concern of a physical nature" and that would be accurate, because all the doctors have been very careful to collect no specimens or conduct any investigations that would belie that position.
People are well aware that stepping over the line might cost them their jobs; priorities have changed, it is the JOB that is important, not the consequences of your actions on other's, and there is a good system now in place to ensure that people are kept in line.

As far as the cmo of that time, who was that, and what is their job now, and what titles have they accumulated since then? A brick wall, I think.

This is not an attempt to be flippant, I totally agree with you, and am outraged, too, but I am simply stating what I observe.

Even doctors are above accountability now and have been given more power to slap down any challenge to lax standards of care or concerns about inadequate care. They have been offered a golden pot of money to dip into every time they shunt someone off to the mental health teams.... AND the 'clinical' definition of mental health symptoms has been grossly expanded and skewed to include disagreeing with or challenging a GP's decisions and also includes --wait for it-- getting angry as "symptoms' of mental health illness!!

The most anyone ever gets from any complaint about negligence or wrongful death from poor medical practice is a written apology from their Chief Executive of their local nhs trust. Done and dusted, chuck.

Those who can afford legal action lose their shirts as things are often drawn out for months/years, and since there is no legal aid for such cases, it is only those who are well heeled that attempt it.
It is a self-perpetuating system of inaccountability and no recourse to change it.

No. we need a strategy, hopeful. But the public message boards is not the place to discuss it, I think. PM me and we will talk.