There doesn't have to be miracle. We just need to do what other conditions that are successful at getting funding generally do: try to support as many researchers as possible with private funding
What are your suggestions for how solve /OMF etc can ramp up their fundraising in America ? It is suggested that’s all we need to do, and stop expecting the state but our charities both in the uk and America have shown themselves completely incapable of raising large sums and in the American context, they’re really going all out - OMF really promote fundraising , regularly have matching opportunities, travel, engage well with supporters are visible at #MM etc - and solve are doing loads on advocacy , trying to get funding from other quarters, as recently from a women’s health grant.
if it was so simple in CFS that private funding could fill the gap we’d have had no issues like we have because at least moderate funding would have allowed us to prove the biological basis but history to date has shown, for whatever reasons, we aren’t just like other conditions in fundraising. Perhaps it comes down to diagnosis rates in the USA, or physicians not necessarily encouraging patients to take it seriously until they’re flunked financially themselves with severity, or the high out of work rate or whatever it is but certainly in the uk context, ME charities are raising 1/30th of MS charities with no evidence that that rate is at all increasing from one year to the next.
id love to see more people and specifically their well family, privately fundraising , but how do you get them to ? Because our charities aren’t managing it. How does American charity income rise from $10m to $50-$100 m in 5 years ?
I personally am for going all guns on both the state and private And I think that alot Of involved patients Are doing what they can but how to we reach and encourage the non involved patients who are probably non political and aren’t just relying on the state, they aren’t donating or getting involved for other reasons.Numbers engaged with charities is just a fraction of those involved, unlike the 40% of MS sufferers. I personally can’t see without massive changes - and not just in patient attitude - or philanthropist backing, that rate increasing much in five years .
there has to be clear mechanisms stated for how more money can be raised privately which are then shared with charities to act upon because nothing is moving on this front. Solve themselves, who Walter seemed to want to shift the blame on,are lobbying the stAte and a calling for among other things substantial RFAs. I fully support them On this and they clearly are trying to both raise privately and get more state money but to me , the quickest option, has to be the state putting in for example next year $30m into RFAs and so on.
I don’t understand how our situation is not seen as special or neglected. When in the UK context what other illnesses are potentially so severe, have 75% out of work (affecting disposable income) affect large numbers, have been misrepresented across the board, aren’t taught in medical schools, have questionable primary care information and privately have fundraised so little and have state funders who haven’t lived up to expectations of official guidance.
