In the IT industry startups provide a different avenue to R&D than the traditional internal investment model. Large companies are expected by the markets to generate profits and hence it is hard to absorb risk of large scale spending on research - it just looks bad when markets have a short term view. Investing in startups has a different model where VCs expect large returns from a few companies. This may be because the start up grows and forms a successful business but it can be because they are acquired by a large company. The unfortunate thing is acquisition looks different on a large companies balance sheet to internal R&D so it can appear better.
It sounds exciting to meet the CEO and chief scientist. That’s aligns with what JE posted, that there is often a personal connection. I understand how patents work, and the 10 year timeline. I have been reading a few articles about the concerns of US Pharma’s. There may be a new wave of generic biological similars manufactured outside the US, which could disrupt the US pricing structures. I am not surprised Pfizer just announced they pulled out of a particular market. It’s nice to hear about people working together as a team on a common goal. Exactly. So true.
@MErmaid My position is similar to Trish's. Have discussed this in more detail with anyone off this open forum? That's not to disparage you in anyway, perhaps it could strengthen your project and help you in what you want achieve. You mention Jen Brea, and I assume Julie Rehmyer and what they have achieved, but neither of them have done it completely alone. I've wished you luck elsewhere, perhaps you are onto something that can help us all. We have no information to know.
Startups are all about risk really. It's not their ability to absorb it, a lot of them don't and end up on the scrapheap. But for those that survive the rewards for early investors are massive. The Venture Capitalists accept the risk because the payoff can be so big, if 9 out of 10 startups go bankrupt, the tenth can cover all the losses and a lot more if it's successful. So it's just a risky place to be. Dow Jones companies on the other hand are the exact opposite, pension companies and other big investors who don't like risk, prefer steady returns so they expect a consistent dividend and a stock price that ticks along nicely over years and years. So pfizer and intel probably won't go bankrupt anytime soon but it's unlikely they'll provide double digit growth either.
Sorry, I just can't see how this is remotely possible. Unless there is data from multicentred trial which shows efficacy in treating ME patients with a drug, and somehow the drug company has not already filed a new drug indication for it. If you can provide more information then please do.
And about time too, and it is mostly me that is flattening those biologic patents - because the pharma companies had no right to them in the first place. The inventing was all done by academics. Genentech wants to keep a patent on rituximab for autoimmunity by pretending it invented not only the treatment but now the dosage. But I actually invented the treatment and the dosing. For me the difference between academia and industry is simply that in academia we try (or used to) to find things of benefit to ill people and make themas widely available as possible for free. Pharma buys in ideas cheap, patents them and screws every last 10,000 dollars out of the patients for as long as it can. They have big glitzy buildings with rolling lawns and carp ponds. They invite you to weekends in Switzerland with private concerts with an orchestra of 150 people and famous conductors, or to Hawaii to swim with turtles and manta rays, all first class air flights. They have huge offices, lecture theatres and pay lawyers with even huger offices on the hundredth floor of the Sears building to screw even more money out of everyone. If anybody has any ideas about how to treat ME/CFS I would like to think they would share it with everyone - that is always what I did. Knowing you have helped some people get better is way more comforting as you get older than a few extra million in the bank.
Thank you @MErmaid for starting this interesting thread. And thank you to everyone who provided insight. Some topics provide a foundation that I was missing. I'm glad for the lesson.
Yes I know one person really close, she is my cousin. A genius, 30+ years experienced in a major pharmaceutical giant company in the research field. She's now retired but does some freelance work. I invited her here but she's kind of weary of ME. It is interesting that she never uses any medication herself even if she needs it. She pushes herself to limits for the sake of not using medication. I'm not really talking about individuals. I have utmost trust, belief in their actions, dedications, etc. It is same when I talk about many other establishments; scientific or social area, people who work in there are in general really good people with a lot of amazing qualities. But I believe the system is faulty and does not allow the common good. This is a political stance now I'm at. I have seen this over and over, many years with very few exception.
What’s most important is what Pharma believes and ultimately chooses to do. IMO, success is where hard work and opportunity meet. So what is it you believe you can do to help with getting ME drugs approved?
I feel the same logic applies to people with hypothyroidism. Leave them untreated or poorly treated, charge the earth for T3 and withdraw it from the NHS because the NHS can't afford it. Ignore the fact that T3 is only expensive in the UK and nowhere else in the world. Deny patients the option to try NDT. You'll end up with hundred of thousands of people who are mostly women with problems which are denied, who are treated with painkillers, anti-inflammatories, antidepressants, diagnosed with fibromyalgia, depression, and dozens of other things. The problems also apply to women with endometriosis, various gynaecological problems, adenomyosis, infertility, chronic life-destroying pain. Tell them their symptoms are medically unexplained and they (the patients) are mentally ill. From the point of view of someone who has spent over 40 years being fobbed off with problems that were denied over and over again, I can only see the medical profession dismissing more and more patients and claiming more and more of them are mentally ill. And the only reason I can come up with for all this sadism and lack of care is that pharmaceutical companies appear to be manipulating teaching of doctors and the medical profession generally in order to keep people ill while denying that they are really ill.
@MErmaid - I've been loosely following this thread, but wanted to mention Amrit Shahzad. She is the newest member of CFSAC and at the last meeting mentioned that her background is in the pharmaceutical industry and would like to build some bridges with industry for ME. Here is her linkedin listing: Amrit Shahzad.
You got kicked off T3? That’s so cruel. It’s so cheap now too. Someone at NHS is a very poor negotiator. Can you buy it online? I have my frustrations too, because the government here once considered banning thyroid meds. But ultimately the patients and doctors won, and thyroid meds are a common occurance now. It’s just crazy, some if the decision making. I humorously say, “lets ban all psych meds!” Well more seriously they can’t, because it’s THE cash cow at every big Pharma.
Wow, I had no idea you invented the treatment and dosing. That’s impressive but also must be aggravating. Thanks for sharing. Didn’t Ron Davis invent something that he couldn’t patent or profit from, because he worked in academia? I think someone took his idea and made millions in the private sector. I am familiar with the flamboyance of Pharma. We need them, but at the same time, they play by their own rules. My gov bends over backwards to accomodate them. We have “vaccine court”, with hidden judges and secret outcomes. Congress listened to Big Pharma, because they were getting killed in the public spotlight with vaccine lawsuits. It was bad press and Pharma wanted to hide the harmful side effects of the vaccines they manufactured. The US pays for the drug research with tax payer dollars. Then Big Pharma turns around and thanks us by charging us more here for the same drug as they do in other countries. I still don’t know who is more powerful, the NRA or the Pharma lobby.
@Arnie Pye IDK The exact issue in the United Kingdom, but here in USA you can get armor thyroid (desiccated pig gland) ad easily as T4. I believe you can get pharmaceutical T3 as well, I haven’t looked for it. It seems the government pretty much control the industry over there, so that may be the locus of the issue. It’s hard to see why a pharmaceutical company would want to keep people hill and at the same time deny that they are ill, Even if they were being run by Aniken Skywalker (Perhaps a few of them are) that tactic would not be good for business.
The way to partner productively with Big Pharma is to buy a controlling interest, then they will do whatever you tell them. Anybody got a spare trillion dollars down the back of their couch?
That is most important, and this thread is about discussing how to get pharma involved. So far I haven't seen anything that suggests there is anything worth pursuing here. If you have more information please do share. Jonathan Edwards has already said he was involved in a workshop with a leading biopharma company but there wasn't much to report in terms of interest or leads, I am curious why you think you have something different.
