What You Can Do

Raise awareness

We need to get:

  • All medication labels changed to mention the problem
  • Ensure all doctors have heard of the problem – family doctors, urologists, psychiatrists, and anyone dealing with adolescents
  • Ensure all pharmacists are informed
  • Ensure all sexual and relationship therapists are informed

We can provide template letters already sent to the organizations listed below.

We need research to happen

For this we need:

  • Donations for the Prize
  • Ensure all pharmacologists have heard about the problem
  • Ensure all physiologists have heard about the problem
  • Ensure network analysts, who can check if other drugs prevent this, have heard
  • Ensure geneticists have heard about the problem
  • Ensure people working with traditional remedies have heard

Don’t think it’s just people on this list that can help. We’ve had some great leads in from retired lawyers and from novelists.

The key example in all this is Anne Marie Kelly, someone with no background in healthcare, or College education, who worked out how SSRIs cause alcoholism and what to do to remedy the problem.

Megaphone

RxISK map

We need your help to build a network of healthcare professionals who engage with patients when they report prescription drug side effects. Learn more about the RxISK Map and why it’s important.

A people’s movement

It looks like this effort is turning into a people’s movement rather than an elite project – a Bernie Sanders rather than a Hilary Clinton campaign. To this end, we need each of the 197 countries on Earth involved.

  • At present we have donations from 16 different countries – 183 to go
  • We need input from activists
  • We need thoughts on how sufferers can “come out” and how they can be supported
  • We need people who can design irreverent images or adverts
  • We need people to map doctors and pharmacists who listen using the RxISK Map (coming soon)

Run a fundraising event

This could be anything from a bake sale through to a sponsored event such as running a marathon or doing a parachute jump. We would be happy to publish details and photos on the website.

Stay in touch

Tell us about your efforts and activities. If you receive replies from journalists, health professionals or other groups, tell us what they said – even if it’s negative. It might help us to work out what we need to say to get them on board.

Let us know if you can think of anything we should add.

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This campaign

Helping with this campaign will not just be helping a serious problem – you will be helping with all problems. PSSD, PFS, PRSD and PGAD almost certainly link to the difficulties some people have with enduring withdrawal. They obviously link to Tardive Dyskinesia. They are highly likely to link to other small fiber neuropathy problems contributing to interstitial cystitis and a host of other problems that sometimes end up with people being labelled as having Chronic Fatigue or Somatoform Disorders.

Contacted so far

Pharmaceutical companies

US:

  • Pfizer
  • Bristol-Myers Squibb
  • Merck
  • Johnson & Johnson
  • Eli Lilly
  • Gilead Sciences
  • AbbVie
  • Astellas
  • Takeda
  • Mylan

Europe:

  • GlaxoSmithKline
  • Astra-Zeneca
  • Roche
  • Novartis
  • Sanofi
  • Lundbeck
  • Alkermes
  • Shire
  • Allergan
  • Novo Nordisk
  • Bayer
  • Boehringer-Ingelheim

Other:

  • Teva
  • Sun Pharmaceuticals

The letters mention the need to spread awareness of the condition, include the problems on the label of medicines and spur research into the causes and remedies. There has been very little response. If your company is on this list, or not on this list, and you believe these issues are important and can see ways to raise their profile within your company, please contact us.

Associations

  • Royal College of Psychiatrists
  • Royal College of General Practitioners
  • British Association of Urological Surgeons
  • American Psychiatric Association
  • American Primary Care Association
  • American Urological Association
  • Canadian Psychiatric Association
  • Canadian Primary Care Association
  • Canadian Urological Association
  • Royal Pharmaceutical Society
  • All Wales Therapeutics and Toxicology Centre

Sexual health

  • British Association for Sexual Health
  • College of Sexual and Relationship Therapists (COSRT) – including 550 of their members
  • Institute of Psychosexual Medicine
  • American Association of Sexuality Educators, Counselors and Therapists (AASECT) – including 134 of their members
  • Answer
  • Action Canada for Sexual Health and Rights
  • The Sex Information and Education Council of Canada (SIECCAN)
  • SHaRe – Sexual Health and Relationships
  • International Society for Sexual Medicine
  • Sexual Health Research Network
  • Austrian Society for Sexology
  • Institute of Family and Sexuality Studies, Belgium
  • Flemish Society of Sexology, Belgium
  • Danish Sexology Association
  • Australian Society of Sex Educators, Researchers and Therapists (ASSERT NSW)
  • Sex Therapy New Zealand
  • Centre International de Formation et de Recherche En Sexualité (CIFRES)

We need the equivalent and more professional bodies in your country or region contacted.

Other groups

  • Foundation for Excellence in Mental Health Care (US)
  • Mayo Clinic (US)
  • MHRA (UK)
  • Mind (UK)
  • National Survivors and Users Network (UK)
  • Relate (UK)
  • E-Drug (Global)
  • Mad in Brasil (Brazil)
  • Fair Medicine (Holland)
  • Health Action International (Holland)
  • Lareb (Holland)

Individuals

  • Sarah Wollaston MP

Journalists/Media

  • Aida Edemariam (UK)
  • Peter Hitchens (UK)
  • Katinka Newman (UK)
  • Lone Frank (Denmark)
  • Jutta Rosbach (Germany)
  • Hiroyuki Ota (Japan)
  • Margaret Carmel (USA)

DONATEReturn to campaign page