Confused about email

[Buffy14]

I am very confused I have just had an email from healthunlocked telling me the leukaemia community might be of interest to me , says it's for people with blood cancer , I don't have blood cancer so why has that been sent to me ?

[Paul_Howard Partner LUPUS UK]

Hi Buffy14,

I believe sometimes these emails are sent from HealthUnlocked if you have ever mentioned anything related to that community, or participated in any conversations to do with it. If you are unhappy about receiving this email, I recommend that you contact them at support.healthunlocked.com/... and let them know.

[PMRpro in reply to Paul_Howard]

Hi Paul, I've had some that have nothing to do with anything I've ever shown an interest in. I, and others, have had difficulty "unregistering" from a community we no longer need/want - really don't imagine their system is good enough to stop the generic sending out of their spam!!!! patient.info isn't much better 0n both counts at present

[Paul_Howard Partner LUPUS UK in reply to PMRpro]

Hi PMRpro ,

These emails are something that I have raised with the HealthUnlocked team in the past because we have received other complaints. All you can really do is complain directly to them and if they receive enough perhaps they will reconsider this strategy.

What is the issue regarding 'unregistering' from a community? Is this due to a glitch or is it that people are having difficulty finding where and how to do this?

[PMRpro in reply to Paul_Howard]

Mainly a glitch I think - they click all the right boxes (once they have worked out how to do it) but it doesn't work. Though it isn't easy to work it out if you aren't particularly computer savvy and, you have to admit, many people on these forums are not, being either quite poorly or elderly.

I take the easy way out and just go through my emails and delete anything I don't want to read without doing so.

[Paul_Howard Partner LUPUS UK in reply to PMRpro]

Do you know if this glitch is still occurring? If it is then I can report it so that it gets fixed.

[PMRpro in reply to Paul_Howard]

No, sorry, we had a flurry of posts about it on the PMRGCA forum a bit back but I imagine most people just don't get upset about it.

[JL1w in reply to PMRpro]

Sorry do you mind me asking what is the PMRGCA forum ? - I am an ex paediatric nurse specialist recently reluctantly had to take ill health retirement at 46 so when I am feeling able I actively try and keep myself up to date and some what educated ! I just wondered if this was another educational group ? Hope you don't mind me asking ? 😀

[PMRpro in reply to JL1w]

Polymyalgia rheumatica and giant cell arteritis - forms of vasculitis that have traditionally been managed by rheumatologists as that is the sort of symptoms most patients present with. The charities have been around for about 9 years now and there are 3 different forums based in the UK (long story), one is on patient.info and one is on HealthUnlocked.

Is it an educational group? Don't know really - I do my best

[Cann in reply to Paul_Howard]

I have had it, too, I think that it could be that immune system problems and blood cancer can all be closely related.

I didn't mind getting it and funnily enough I had just been talking to my GP on the phone about high immunoglobulin in my blood tests and possible connection to bone marrow, coeliac disease, etc. and how my mother and grand mother both had bone marrow problems and then went on to develop leukaemia, which I hope very much I don't.

As far as I am concerned the more I can find out the better in order to help myself, so I don't object to such emails if it means more information.

[PMRpro]

Because they are sent out automatically by the computer (to everyone I imagine). They set up new communities and need to advertise them - and existing members of HU are easy to get at.

It infuriates me - I don't want to know about them, I have enough to do as it is

And for others it makes them wonder if they know something they don't!

[Buffy14]

Oh right thanks for that x