Yesterdays meeting with Steve Ladyman, Minister for Health UK

[Guest guest]

YESTERDAYS' MEETING WITH STEVE LADYMAN, DEPUTY MINISTER FOR HEALTH

(UK)

I wanted to bring to his attention the appalling lack of treatment

by the NHS for people diagnosed with CFS/ME. Naturally I gave him

my personal story first mentioning how my GP regarded the condition

as primarily psychological, something I found really insulting when

I had always been very fit, active and was a teacher in both adult

education and at secondary level.

He tried to tell me this is how it was in 2000 but things had

changed because there were now 12 (I think I have this number

correct, but it could be 8) centres of excellence throughout the UK

where the doctors would be looking at ALL aspects of the illness and

certainly not just psychological issues which he insisted some

people did have.

I pointed out that having this rubbish diagnosis and with the help

of the Internet I searched for my own answers and I pointed out that

my own personal experience was that I found out that I had

scientifically proved mercury poisoning which could only have come

from my dental amalgams which had been done through the NHS system.

This finding then lead me on to finding out about the role of the

endocrine system but the NHS let me down again because of their

narrow definition of what thyroid disease/function should be which

turned out to be incorrect in my case (the US system has recently

changed their criteria to a much stricter range for the TSH which

should pick up many more cases). I had to have private lab tests

and only through dealing with private docs did I get the correct

treatment.

For many with CFS their adrenals are also badly affected and I

showed him a study published last year by the Psychiatry Dept of

Guys and St ' which came to the conclusion that low dose

hydrocortisone benefited many of the patients on their study. My

own test results correlated with their study findings but when I

asked for my GP to therefore treat me with h/c he felt unable to do

this.

Dr Ladyman's secretary took notes throughout and Dr L kept telling

me that I needed to be referred to one of these centres who would

then treat me. So far so good and he thought the meeting was over

but there was far more to tell.

I moved onto the fact that all of above treatments did help me but

didn't change the fact I was still sick and unable to do much

physically so I needed more answers and again with the help of the

Internet I learned of a private docs' finding that a huge number of

people diagnosed with CFS were testing positive for borrelia, the

agent that causes Lyme disease. My blood was tested and came out

positive. Dr L commented that here in Thanet we had a local

connection to Lyme disease because it was the Pfizer scientists who

discovered the bug in Connecticut in the US and named it Lyme

disease, (Pfizer is the largest local employer in my area and Steve

Ladyman used to work there).

He pulled a face when I mentioned about Dr W's research showing a

very high number of people with CFS did in fact have borreliosis and

said he couldn't comment about his findings but tended to doubt

these findings and until he published his research we could be no

further forward. He said that sometimes science moved much quicker

than the medical community could keep up with and maybe this is what

is happening now with CFS but assured me that these new Centres for

CFS should be looking at the infectious issues too.

I mentioned the appalling problem in this country over testing for

borrelia and Southampton's dismal record and how they had let so

many people down and showed him the 16 or so people's desperate

stories of ill health, incapacity and non-treatment because of

doctor's lack of knowledge of Lyme borreliosis disease. He couldn't

agree with me on that but assured me he would read all the stories

later, I mentioned Eurolyme have around 750 members but he warned

me about some CFS sites on the Internet as being completely

inaccurate. I assured him I didn't go on these particular sites but

stuck to the ones giving accurate information.

By now Dr L had had enough of me but again I brought to his

attention the fact that I had to pay for all my abx treatments, even

getting meds from Mexico to try and save some money and when on the

abx I felt so much better and greatly improved which was the

experience of so many others too. When we came off them we relapsed

and this couldn't be just psychological so Dr W probably has got it

right. He assured me yet again that if I was to be referred to one

of the new Centres they would no doubt look into the borrelia issue

too.

I was quite persistent and probably demanding too and Dr L did seem

to be sweating quite profusely but it was a warm day!!!

Anyway the message I came away with was that he did listen but seems

completely convinced that these new CFS centres are going to be the

answer to all our problems and will be dealing with every aspect of

CFS including infectious causes. Therefore I suppose anybody you

know who has had the diagnosis of CFS should be asking for a

referral to one of these centres. He is going to be writing to me

and I hope giving me the details of the addresses of these centres

which I will be happy to pass on.

I would rather not bother with the hassle of going to London to see

another NHS consultant but I suppose if I am to keep on campaigning

I had better find out the facts of how good these Centres are by

being referred to one myself!

Sorry this is so longwinded and I hope the meeting helped a bit.

Pam

[Guest guest]

Well done Pam.

I left the UK and voted with my feet. The place is a hell hole when it

comes to health. The death rate in the UK reflects this fact, yet the

incapacity benefit claimants also. Though this figure is distorted

because many cannot get a confirmed dx from there (so-called) doctors.

The Doctors also stand accused of being corrupted by Glaxo and other

Phama. The situation is like a death camp in Nazi Germany. Not to

mention the waiting lists to see the retards. The new centres will be

another load of nonsense I am quite sure of that.

Mind you here in France which is hailed as having the best health

system in Europe, the situation is better but many of the same problems

exist. Such as it is good in as much as you don't have to wait 3 months

to see the retards but when you do they are often as dumb as their

counterparts in the UK. The situation of Dumb doctors seems quite

universal. It must have to do with there selection and training, no

less by P-harm.

Does anyone have details of a good vet?

s

> I was quite persistent and probably demanding too and Dr L did seem

> to be sweating quite profusely but it was a warm day!!!

>

lol