I was reflecting overnight and thought I’d put together a few words summarising what has been achieved so far in 2024.
MHRA review and changes.
European review in progress.
Record number of ADRs not just in the UK but across the Globe
The publication of a number of news stories with more in transit.
A slot on a BBC daytime show scheduled
The launch of sidefxhub and UK based charity.
The announcement of Melcangi studies with funding initiatives.
PFSN study progress and continued funding.
Sidefxhub key initiatives in the pipeline.
The growth of Morale Medicine videos.
Collaboration across communities.
I’m sure I’ve missed some items, but there’s a lot to be positive about when reflecting on 2024. It has been one of, if not the most productive year’s to date.
None of this would have been possible without sufferers stepping forward and doing what they could, not only for themselves but for the wider community.
I’d like to say a special thank you to those at home and abroad who have given up so much of their own time. I’ll not name them as we know who they are.
I believe 2025 will be an even better year as we continue to increase awareness, push for acknowledgement of the full array of devastating symptoms, and hopefully accelerate timelines towards finding a treatment.
The little things you can do that mostly cost nothing are: -
Report every symptom separately to the regulatory authorities. One submission per symptom. It takes 5 minutes. This is very important.
Approach Morale medicine to be interviewed. Site views are growing by the day. Each video helps. It can be liberating, losing the cloak of shame that the wider lack of validation brings.
Get involved in some of the tasks. Being part of the movement can bring a feeling of value/purpose and reward. Another trait we’ve been robbed of. There’s no added pressure when helping in this arena.
If you can afford it, consider donating to Melcangi. Every little helps. Remember, for every UK based donation, the government gives a further 25%… Having the potential biomarker for this condition could prove huge. Every penny counts. The Foundation provides regular updates.
All studies should be supported.
Don’t let the system/institution be the excuse for inaction.
Never give up.It’s been the greatest weakness of this community for years. If we all try to do something, we will prevail.
Inaction = no change
Action = change.
On a heartfelt note, I appreciate as much as anyone how difficult Christmas is for us. It’s a huge reminder of the loss of basic human emotions such as intimacy, warmth, and love. This time of year, exasperates our symptoms.
Remember, none of this is your fault. Stand tall and try to be kind to yourself. You should be proud of making it through another year while battling this unrelenting, unrecognised condition.
Too many lives have been lost. No matter how difficult know that your presence is still of value to the world.
We all want to be around when this is recognised as one of the biggest scandals there’s ever been.
Kindest
Laz
for those of us who keep declining with worse and worse symptoms year after year we need a little hope for sure!