Worth reading this! For most of my adult life I had very severe depression (caused by several factors, including symptoms of ME but I had a GP who treated such matters with contempt). Drug treatments for anxiety and depression have been linked to dementia and I preferred to avoid them wherever I could. Perhaps foods which have the reputation for having anti-inflammatory properties could be researched and I think the role of chemicals in auto-immune illnesses needs more attention. I am concerned that most research focuses on finding pharmaceuticals to treat illnesses rather than causes and preventions.

14 Replies

  • To be fair, by no means all research focuses on finding chemical cures - because in order to find a cure you must know the mechanism. Often when a new substance is being investigated for efficacy in one illness it is found it has a side effect that affects another illness - and sometimes that is an indication of the mechanism of the illness because you know what the substance does. But the basic research is hard work and not particularly "sexy" - so funding is hard to come by. None of the basic research I have been involved with in 40 years of being married to it was anything to do with developing drugs per se.

  • Most of the research I see online has been funded by very rich drug companies who have a most appalling reputation, including for paying doctors to prescribe. I would love to hear about the reseach findings you have contributed to. The huge amount of confusion that patients suffer could be relieved enormously by doctors just listening to patients. 'Signs and symptoms' seem to be important in other illnesses but doctors seem to be very uninterested in many of the patients that I have had contact with. The NHS has a lot to answer for allowing only 10 mins per patient and not referring patients when necessary to a consultant. I don't expect to have to be 'sexy' - it's not all about them, they are paid to attend to patients. My treatment has been 'doctor' rather than 'patient' centred. I wonder what happened to the hippocratic oath!

  • In the days when it was still allowed I was a volunteer for my husband's PhD - very basic research which developed a way of measuring pH in skin. He progressed to working on measuring oxygen in skin and a device was developed that would have cost about £100 instead of thousands and made monitoring oxygen levels possible in the Third World (as we called it then) and I worked with him as a lowly research technician. Big business squashed that. All that work was done by him as his hobby really - he had a job in the NHS (not a doctor) and could have a research medic but his own stuff was done evenings and weekends. Then they cut even that allowance - so he retired early.

    But the basic idea is still there 30-odd years on and is under consideration again (with refinements that are possible now). The technology is being applied elsewhere very promisingly - by him, who now works for less than the cleaner to continue research. The research in his field is published every year as the "Proceedings" of the annual meeting. Very little is financed by Big Pharma, much is done as he worked - yes, they have posts but research isn't a 9 to 5, Mon to Fri thing.

    But beyond that, vast amounts of such work is still done, by scientists who, if they are lucky, have a 3 year grant. If they are VERY privileged they have a "proper" job as they get older. But the salaries are not princely even then. Where the starting salary figures for graduates are worked out from is a mystery to me. The science/NHS members of the family earn rather less than that figure after several years. The marketing ones are on more than double. The drug companies are good at marketing - that is why that is what you see.

    I have friends all over the world just as passionate as my husband is - still working for peanuts way past retirement. But you won't hear about them - it is basic research and tends not to make fast bucks.

  • People offering their time, skills and knowledge with integrity, generosity and kindness is very wonderful indeed. How impressive that your husband has offered to do this without recompense. However, I do hope more studies can be done in autoimmune illnesses without recourse to drugs. I'm not the only one who wishes for an alternative and not the only one who is disaffected with modern medicine per se, especially current NHS cuts and the mentality of doctors who expect patients to bow and scape for necessary treatment to prevent very serious disabilities.

  • Not entirely without recompense and he gets expenses covered - it keeps him out of mischief and from under my feet and keeps the grey matter ticking over!

    I'm afraid I'm far from hopeful that autoimmune disorders will be controlled without "drugs" - simply because of the mechanisms involved and the definition of "drugs". Where something biological is going wrong you either have to accept it or interfere in some way. With "substances" - otherwise known as drugs.

  • I hope he is successful and receives something back. I'm sure he means well and could spend his time on golf or going down the pub or other nonsense! I do take pharmaceuticals when I have no alternative though I am aware of their deficiencies and that they can cause as much illness as they relieve. If environmenal factors, etc., are involved, we might be empowered at some time in the future to be able to prevent illness of this kind or treat it in such a way as to avoid further illness. I don't think the government care about the health of the nation and are more interested in supporting big business. At a time when we all knew that smoking caused ill-health, I campaigned for the 86 poor beagles subjected to cigarette smoking, yet it is only now that cigarette smoking has been banned in public places.

  • Dear all,

    First of all nothing that I'm about to say here is, in any way at all, intended to upset/put out or offend anyone- that is a promise. The comments/criticisms, made above, are valid and yes the drug companies are, quite often, driven by profit. All of these, very valid, points I fully accept.

    However the Health Service, in this country, is exceptional, no really! I collapsed and was certain to die until the NHS literally saved my life-as it does to hundreds, possibly thousands, of people like me, like us, every single day of the year. Even on Christmas Day itself the service is still available; now I'm sorry if this is not 'in keeping' with, some of the 'current thinking'. Actually no I'm NOT sorry if this DOES offend those, who have nothing better to do than find fault with 'everything'. Clearly anyone who has genuinely had a bad experience is in an ENTIRLY different situation, to these people I truly send my love and best wishes.

    I hope that I have explained myself clearly, hope being the right word!, and that you all do understand what I'm trying to say. It's just that SOMEONE, 'muggins' again, has to speak up in defence of our, generally quite amazing, system and I fear that if I don't no-one else will! Before you ask NO I'm not on the 'payroll'!

    Anyway now that I've, well and truly, 'put the cat amongst the pigeons' I'll wish you all a Very Merry Christmas, and Happy New Year.


  • Dear AndrewT, all forum users are entitled to their opinion. One person's opinion is not worth more than any other and you are entitled to yours and I am entitled to mine. If you are satisfied with the treatment you have received, good for you! My experience has not been good because I knew more than my GP about GCA which made her defensive over the fact she had misdiagnosed me as having PMR and I lost some of my eye-sight. I also refused to have both cranial arteries cut and an inch section removed from each, for these to be stretched and sewn together whilst they were inflamed. The main reason for refusing this diagnostic test was because I needed to avoid the very high doses of Prednisolone that would neeed to follow. I managed to avoid the very high doses but did not have a good relationship with the powers that be, because I did not accept their 'expert' opinion. That is my perogative. If the NHS trained doctors better, and had more than 10 minutes per patient, they would be less likely to miss important symptoms. I can only speak from my own experience and from those who I have been in contact with who have suffered from GCA and also had appalling treatment. It's not a competition as to who is right and who is wrong, it is just a case of the forum provides the opportunity for users to express their opinion. If you think a forum user is not entitled to their opinion, take it up with the moderator, that is what they are there for.

  • Hiya hope everyone has a lovely Christmas and happy healthy new year 2015 ! I take tumeric after finding out about it from a patient in the hospice I work in . She had been reading a book called mums not having chemo by Laura Bond. You can look it up on cancer researches website although the information has been greatly reduced from when I first looked at it! Of course you can't patent tumeric!!!!! I have to say it has reduced my flares along with the other stuff I get up to. modern medicine is wonderful and there are amazing dedicated people working to help others but why can't we use both ? You just have to do what suits you but we can be open minded . Love Diane

  • My initial post above is about new research projects which I thought would be of interest to vasculitis sufferers (I have Giant Cell Arteritis which is the most common form of vasculitis). I did say 'most' research forcuses on finding pharmaceuticals, not 'all' but by far the largest amounts of money supplied for trials is provided by them in their efforts to find drugs to treat illness. I would rather this was not the case and I make no excuses or apologies for stating my opinion and concerns.

  • I'm pasting this link on here in the hope that it provides some hope to this discussion. I sent this same link to my GP by email after listening to it and he responded saying that he'd already heard it and found it very hopeful and exciting too.

    I don't have Vasculitis and don't often come here. However I do have RA with a progressive small fibre neuropathy - which can sometimes go with Vasculitis but rarely goes with RA - so I use several HU communities for support and information for my broader type of autoimmunity.

    For what it's worth I don't think it is possible to for anyone to be right or wrong about the NHS because each of us will experience different things from it - some good, great or else bad or indifferent depending on the severity of our health conditions, individual doctors we encounter and the health board or health authority in question. I sometimes feel very angry with my doctors and at other times enormously grateful.

    My way of dealing with things is to volunteer for the NHS and also for a health related charity - as this way I feel I might possibly be able to influence how well it works for myself as a patient as well as hopefully for others.

    Happy new year to you all.

  • Thank you very much twitchytoes for visiting and for sharing this valuable link. I will share it on my social media. It's good news for 2015!

  • You are very welcome WMTuk - glad you found it valuable. I also shared it on my social media - very exciting really especially for those of us who are unable to tolerate many drugs at all.

  • A useful video for those interested in the use of pharmaceuticals:

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