News letter

[Nackapan]

It seems The Pernicious Anaemua Society are doing a survey.

Great

I was keen to help.

Only if you've got a diagnosis it seems I read on.

I rang the helpline for the first tine in over 3 years of being a member to clarify this.

I had an answerphone and was called back a few hours later.

I explained I would like to take part.

Everything else to date as been ruled out .

Definitely an absorption problem and have anx need regular b12 injections.

The person that called me didn't know.

They went on to explain its a blood disorder 😐

Does anyone know the answer please.

If we had a definitive test,so much easier

Or funds to have several private Intrinsic factor tests . To get a positive result perhaps ,,???

Would a private test result be accepted??

Alot if NHS doctors don't??

I paid to be a member as 'assumed ' PA

by my Gp eventually .

Hoping for research of am accurate test too.

Perhaps there's a second survey for IFA neg or if you've never had s test but need regular b12 as an absorption problem.

'Assumed PA ' by a Gp??

I Hope they get enough people to take part.

( all on new found ability to speak for a while on speaker phone on the mobile)

[Gambit62 Administrator]

I think they are looking for people who have a confirmed diagnosis of PA so they know that the results are relevant to PA and won't be skewed by other conditions.Understand your frustration but also understand why they are asking for confirmed diagnoses.

[LadyBothwell]

There’s going to be a lot more surveys from the PAS. As a result of the top 10 uncertainties identified in the recent JLA Priority Setting Partnership there’s going to be lots of questions asked about diagnosis and treatment, The charity’s role is helping find experts to run proper studies that are based on science and to help find funds for research as well as encourage members to participate in relevant questions. People with PA are not all the same and not treated the same by healthcare because of the lack of a proper test and proper understanding of treatment needs, so first it has to be established what is a consistent and accurate test.

I have some knowledge of how research works from my job.

Researchers set the criteria for the questions to ask, not the PAS. This is why in this instance this researcher behind the survey request is asking for a specific group of people who have had a specific test result so that they can base their research on that. It doesn’t mean that people without a positive test or who have a self diagnosis or a doctor who says “ I think it is PA “ don’t have pernicious anaemia. There have been and will be other surveys that ask questions about lack of formal diagnosis, treatment and inadequacy of it, about tablets and injections, about other autoimmune diseases, about family history, about how sufferers and family members feel.

When research is published you will notice it always says what the defined characteristics of the group were. Then conclusions are based on that which are used to make headline “claim”. For example if you watch a skin care advert it will say the cream reduced wrinkles in 80 out of 100 women but if you asked for the full research behind that statement it will have asked for women in a certain age group who don’t smoke or don’t have sun damage. So what you don’t know is how that product works on other people who don’t fit that criteria and there would be a different research study for that!

[Nackapan in reply to LadyBothwell]

Yes its a start. The undiagnosed a larger percentage I guess

Down to a poor diagnostic tool.

As some will have a false positives fir PA too.

As long as it triggers research

[Cherylclaire Forum Support in reply to Nackapan]

So frustrating I know. But LadyBothwell has made a lot of sense of it.

It is not at all unusual for a PA diagnosis to take over 10 years (14% in a survey of 889 PAS members)- so in all likelihood, many of the people posting/replying here on the forum are still in the waiting-room, so to speak.

Almost 1/4 of those in this survey waited over 2 years- which could not have been highlighted at all if this particular survey hadn't been restricted to those with an eventual PA diagnosis. Let's hope they've all managed to keep them, because that's not a given these days.

Having come (almost) to the end of the line where investigations and tests are concerned, I still have no real undisputed answer six years on. I cannot think of another thing to ask for that might help me with that. So now all my hopes are pinned on future research.

In the meantime, any small steps to be celebrated - I'm really pleased you were able to speak on the phone .

And if you ever do get a diagnosis, frame it !

[Nackapan in reply to Cherylclaire]

Yes I will frame it@

Let's hope more research will give more explanations / reasons to work with.

[Cherylclaire Forum Support in reply to Nackapan]

Then we can all just jog on with our lives.(Really not going to waste any of it jogging !)

[Nackapan in reply to Cherylclaire]

No lol .I've never jogged.

So not missing that !!