LUPUS UK

Considerations for forum users

Having read numerous posts from the administrator, I feel compelled to make the following comments.

Any drug/compound that cannot be patented will obviously have a lack of clinical trial data as (despite clear indication from the medical community of its benefits) pharmaceutical companies do not consider the monetary returns "sufficient".

My research to date.(PhD student) has been indicative of a clear "bias", particularly by sites associated with pharmaceutical companies (as is this site).

My recommendations to any user would be to do thier own research. After all, the administrator (Mr Paul Howard) of this site has strong links to Glaxosmithkline

In February 2016 this company was fined £37.6 million for "illegal behaviour" in relation to its antidepressant seroxat.

In july 2012, Glaxosmithcline were fined £1.9 billion due to bribing doctors

***PLEASE READ THE COMMENTS FOR A FULL RESPONSE FROM PAUL HOWARD (LUPUS UK)***

33 Replies
oldestnewest

Your post is a very damning indictment of this site and the administrator. Perhaps you would share with us, the evidence that you have of these 'strong links' and 'bias'?

6 likes
Reply

Its hardly rocket science. Google lupus uk and glaxosmithkline.

Reply

I'm very shocked by this post. Can I ask what you are trying to achieve by writing it?

I use this site as I find it very supportive and informative. Its always a place to turn for help. I would also like to add my support for Paul who does a brilliant job of running this site and had always been very kind and helpful.

20 likes
Reply

My comments by no means questioned the importance, helpfulness and support provided by this site. What is imperative is that every user/sufferer is provided with unbiased.information . For example low dose naltrexone There is extensive data (which is publicly available) indicating that for some.lupus sufferers it is very beneficial. To be dismissive of anything that could be.potentially beneficial to any sufferer I consider inappropriate.

Reply

I too am shocked at this post and I'm also unsure of your motives. This site isn't responsible for prescribing and Paul is usually very quick to post that queries related to medical care and treatment be directed to your dr.

This site is a supportive community, I have benefitted greatly from it?Drug companies fund a lot of research into diseases, some nurses are part funded and I wouldn't be alive if it wasn't for these drugs.

Paul has always been supportive and quite frankly I don't care if he has anything to do with a drug company or not. He moderates this site excellently, is supportive and appropriately directs queries back to the Drs if necessary. Drugs are a necessary evil in managing lupus and these companies do invest in research,conferences for Drs,patients etc etc. There are now strict guidelines in the NHS about medical reps and what they can and can't do. I think the way you have posted this naming individuals isn't positive at all and certainly doesn't fit in with the ethos of this forum

22 likes
Reply

And you have clearly missed the point of the post. Are you Pauls Glaxosmithkline drugs rep?

Reply

There is no need to get offensive Michelle. I haven't missed the point but just pointing out another side to drug companies and expressing my opinion

17 likes
Reply

You are quite right to be concerned at the influence of big pharma, michelleadams. It's a shame that you chose to raise the issue with an OP that is weakly argued and probably libelous. Your response to rolybear is simply disgraceful. Please reconsider.

18 likes
Reply

Hi michelleadams,

It is inappropriate of you to suggest that the information and support I offer as an employee of LUPUS UK and an administrator for this community is biased and that I am somehow swayed by an 'affiliation' with GlaxoSmithKline. I do not have any 'strong links' with the pharmaceutical company. I would like to note that in the past two financial years the percentage of LUPUS UK's total funding from pharmaceutical companies amounted to 0.07%.

This site is NOT "associated with pharmaceutical companies".

LUPUS UK does work with a number of different pharmaceutical companies at times to ensure that patients voices are heard and considered. We do not promote the use of any treatments, whether they are licensed or complementary. We would always advise people to discuss any treatment options with their consultant.

As an organisation which is certified under The Information Standard (a scheme managed by NHS England) we are required to provide information that is up-to-date, unbiased and evidence-based. In response to your specific complaint about my responses to your claims about low-dose naltrexone - healthunlocked.com/lupusuk/... I was pointing out that I had not seen any clinical evidence which proved that it was a safe and effective treatment for lupus. You provided a link to some evidence for other autoimmune conditions, but nothing for lupus. The treatment may be effective for some people, but we cannot currently say that this is not due to a placebo effect or any other possible variables. The treatment may also have no effect or potentially not be well tolerated.

I would finally like to point out that this post is in violation of the Terms of Use for the HealthUnlocked website - healthunlocked.com/policies... Your post makes defamatory accusations against a named individual (me) which are libellous. In the interest of transparency I will leave this post on the site, but I must warn you that if you wish to continue to contribute within this community, you must follow the terms of use.

47 likes
Reply

That's a good reply, Paul. Although the OP clearly violates the community rules, responding in a direct way to debunk misconceived criticism is often more effective than simply killing the thread immediately x

22 likes
Reply

Agreed. Well done Paul.

12 likes
Reply

Well said Paul.

I found the post ill-informed, inappropriate, offensive, and so not in line with any of the terms and conditions of use.

Like maurice1, I do wonder what the agenda is here?

10 likes
Reply

If you're working for a big pharmaceutical company, they should demand their money back - you're not doing a very good job promoting their products.

10 likes
Reply

I could do with the money! I'm getting married in October this year and my wallet keeps getting emptied very quickly as a result :P

26 likes
Reply

Well said Paul - you have always been extremely professional as well as most supportive, caring and helpful in all of your dealings with this forum and Lupus UK in general. I cannot imagine what michelleadams has to gain by this post. I know there are groups out there 'pushing' low dose naltrexone for the treatment of lupus (amongst other things) and I believe this person must be one of these people. If there was substantive clinical evidence that LDN could be useful, then there would be no plot within the pharmaceutical industry to withhold this drug from people with lupus. There are many examples of drugs developed for one condition being used to treat another: hydroxychloroquine is a case in point.

Please do not lose any sleep over this malicious post Paul as I am fairly sure that pretty much everyone who is a regular user of this site will be standing right by your side on this one!

Terri

12 likes
Reply

We're 24 hours on from yesterday's debacle, and the dust seems to have settled. It must have been really horrible for you Paul and I hope that you're feeling better. I think that not deleting the post was the right thing to do. However unpleasant it was for you, better to be transparent than leave yourself open to accusations of covering up wrong doing. As my old mother used to say, 'everything passes, nothing lasts forever'.

7 likes
Reply

I don't mind the post from Michelle. I don't even mind her patronising tone or her vehement comments. Everyday on this site, I read opinions that I don't agree with, experiences that I haven't shared and lifestyles/treatments that I can't relate to but nobody tries to coerce me into a particular way of thinking or acting. I am a big grown up person and I can make up my own mind about how I deal with my illness and which tips I will take from all the posts that I read. I have always had lots of support from this site and I am thankful.

What has piqued my curiosity with regard to Michelle's post, is what exactly is her connection (if any!) to LDN RESEARCH TRUST. Come on Michelle, let us know - in your words ' it isn't rocket science'

15 likes
Reply

"Are you Paul's drug rep?"

"Its hardly rocket science?"

These comments are so unnecessary. I see that you are attempting to make a point but your method is distasteful.

Plenty of people on this site are intelligent enough to make their own decisions just as maurice1 says.

I am in the medical profession and yes I agree that there are issues with drug companies but to suggest an affiliation to a named person on this site is unfair.

Without these companies research and development wouldn't happen. There has been a big focus on cancer treatments, heart disease and diabetes which is all vital work. However, the research into SLE and other auto immune disease, in my own opinion, has been lacking over the decades. I'd be delighted if more research is done and if that means that GSK or any other company wants to have links with Lupus UK then so be it.

As for medical advice on this site, I see it as a platform to share experiences and gain knowledge in a helpful, non judgemental manner. In fact very little medical advice is given. It is more about managing situations. Paul is always quick to point out that any medical advice should be sought from a trained professional who has the qualifications and knowledge to prescribe.

And on the point of bribing the medical profession. Yes, it did happen and they got fined. I have a GSK pen on my desk, a Pfizer mug and a Laerdal mouse mat. Does that make me biased? I'd like to think that the medics I know prescribe medication and treatment which is in the best interest and in agreement with their patients not because they once got a freebie from a drug rep in a sharp suit years ago.

I'd be interested in reading your thesis once completed and also would be interested to know who is funding it.

16 likes
Reply

My best guess regarding funding would be LDN Research group - it promotes the use of Naltraxone. I'll be interested to see if she replies to my last post.

4 likes
Reply

Ah ha...no surprise there then maurice1.

And here's a thought... I would have thought that it wouldn't be beyond the wit and competence of a professed PhD student to get her facts right, present an argument without resorting to personal abuse...and state any potential conflicts of interest.

Shameful!

8 likes
Reply

Personally, I would have deleted the post by michelleadams. The inference is clearly intended to be inflammatory. What needs to be said has already been said by others, I don't need to add to it. Shame on you Michelle Adams.

7 likes
Reply

I am horrified at this post. Everyone else has said all that needed to be said but I would add this person joined 7 hours ago, how many posts had she read? Is she really a PhD student? I don't think someone of that intelligence and education would post like this and become so offensive and personal when challenged, so quickly. On any other site she would have been called this a while ago, troll. I doubt she will come back with anything intelligent, remotely addressing your replies and questions.

11 likes
Reply

Would a PhD student say things like "bias" and "illegal behaviour" in quotation marks? The whole tone and grammar of the post doesn't sound like a PhD student.

5 likes
Reply

Agree. If you look at the definition of troll it fits perfectly. We don't need them here on our fantastic site.

3 likes
Reply

Unfortunately forums like this and others on HU are a target for those who, for whatever personal problems drive them, get some kind of gratification from causing upset. On balance , all the lovely warm and kindhearted users of this forum vastly outweigh and outnumber the sad individuals like michelle adams and those like her.

I worked for Burroughs and Wellcome which became The Wellcome Foundation for many years prior to their becoming GlaxoSmithKline, the research undertaken by the company in both the medical and veterinary fields has been world class and valuable without question. Yes they were fined, so as a company they lost their way; the advances in medicine that they were responsible for should be recognised as well.

As for the personal attacks on Paul, well, some people are so unsuccessful in their private life, that they need to massage their ego' s by attacking others who they perceive to be either an easy target or enviable good at what they do. Paul, as we all know, is the latter.

This person is to be pitied. Or of course dismissed as a nutjob!

7 likes
Reply

I'm simply reporting this post and user as abusive towards others forum users. Obviously this person is no lupus patient and does not belong here.

7 likes
Reply

I take it she's not coming to the wedding?

Happy planning Paul 😃

9 likes
Reply

Great response Paul. It does look like somene has a bee in their bonnet... personally, I think you're doing a brilliant job, as do countless others.

I'm with Wendy39 - joined 7 hours ago...bit suspect!!

Great news on your wedding Paul - congratulations 🤗🤗🤗

C xx

10 likes
Reply

Well said Paul_Howard I think you have taken the right approach. I think you deserve an apology from michelleadams . I personally am glad that GSK take an active interest in Lupus and Lupus UK ... we need people to invest in research, conferences, developing new drugs etc. I don't think that is the same as being "affliated". Lupus UK is a great source of support, help and advise. Whilst everyone is entitled to their own opinion, there is no room for derogatory and offensive remarks on this site, and offensive behaviour will get reported by members of this HU group as this is a "troll" free zone

11 likes
Reply

I think this person has just popped up on here to get reactions and try to stir the .....! So rude

3 likes
Reply

Pardon? I have by no mean just "popped up", work commitments mean its not possible to constantly be on-line. And stir***???? Really???. I will look at and reply to previous responses now.

Reply

Could you please provide proof that Paul Howard has "strong links" with GSK?

2 likes
Reply

It's not clear from your post whether or not you have Lupus or one of the other equally devastating diseases! If you do, then you clearly haven't been ill enough to accept medications despite the politics of the drug companies involved. Frankly I don't care who are 'bed partners', I just want to have access to as many options as possible for me to decide how I want to manage my illness.

Paul is always superb at mediating issues that arise that should clearly be referred back to an individuals own medical team. He does not promote or cite a treatment to be detrimental, unless he links it to a clear and reliable source of information .

There are plenty of posts on this forum that I disagree with, as indeed I might post something that others disagree with. But everyone manages to express themselves and take or contribute in a mature and polite fashion.

It is not clear what your motives are for being on this site, other than to be angry and offensive. I am sorry you feel ill enough to take it out on others. I hope you get better soon.

I have always found Paul's comments and interventions appropriate and transparent.

Your behaviour is not becoming of any PhD student at all.

6 likes
Reply

You may also like...