There Will Be No Meningitis B Catch-Up Vaccines For 2-Year-Olds, Government Says

Charities say they are “dismayed” that the meningitis B vaccine won’t be extended to all children in the UK up to 2 years old.


The vaccine was introduced last year and is routinely given to children up to the age of 1. Under-1s are most at risk from the disease, with cases of meningitis B currentlypeaking at five months.

A campaign to extend the vaccine and provide a catch-up programme for older children who missed out when it was first introduced gathered support when parents of a 2-year-old who died from the disease shared their daughter’s story. A petitionasking the government to make the vaccine available to all children up to age 11 became one of the biggest ever.

Since then, charities have been campaigning for the vaccine to be extended to children up to age 5, and in April the government asked its Joint Committee on Vaccination and Immunisation (JCVI) to look into extending the vaccine to children up to age 2.

But in minutes of its June meeting that were released on Wednesday, the JCVI said that while it could be cost-effective to extend the vaccination to children between 13 months and 2 years old, there were not enough vaccines to ensure supply for such a programme.

Trying to complete a catch-up programme for under-2s before the start of the meningitis season in December this year would mean using existing vaccines put aside as a “buffer” and could “potentially put the running of the infant programme at risk”, they said.

The JCVI also said it would not be cost-effective to provide the vaccine to children aged between 2 and 11 because of the “very low levels of the disease” seen in those of 2 and above.

Liz Brown, CEO of Meningitis Now, said the charity was “dismayed” at the decision and that it will “continue to campaign passionately for all children under the age of 5 to receive this life-saving vaccine”.

She added: “We stand for the many thousands of families who are unable to protect their children from this devastating disease because they cannot afford to buy the vaccine privately. We will continue to fight against a system that discriminates against the health of the nation’s children on an ability to pay basis.”

Vinny Smith, chief executive of the Meningitis Research Foundation, said the charity was “extremely disappointed with the JCVI’s conclusion”.

He said: “This is a significant opportunity missed to save young lives from this dreadful disease this winter. It is regrettable that vaccine supplies to protect these children cannot be secured in time for this year’s meningitis season without jeopardising MenB vaccinations for younger children who run an even greater risk, despite the renewed availability of vaccine for the private market.”

In a statement provided to the Science Media Centre, Dr David Elliman, a paediatrician at the Royal College of Paediatrics and Child Health, said that when the meningitis B vaccine became part of the routine immunisation programme last year there were “a lot of unknowns” and it was “barely cost-effective”.

“We were the first country to introduce this particular vaccine and should be proud that babies can benefit,” he said. “Lives will be saved and some babies will be spared having lifelong disabilities,.”

On the new decision not to extend the programe, Elliman said: “The JCVI felt that the priority should be to immunise the younger children who were at greatest risk and that nothing should be done to put delivering vaccine to them in jeopardy. They therefore advised against the use of the vaccine in the additional group of children. This must have been a very difficult decision for the committee, but I am sure it is correct under the circumstances.”


Insights into neurons that cause symptoms of Rett syndrome could guide new therapy search

Two studies in mice from Baylor College of Medicine, Texas, reveal new insights into neurons that mediate symptoms typical of the postnatal neurological disorder Rett syndrome.

Rett syndrome is a childhood disorder that typically manifests after the first birthday. Early symptoms include delayed development and poor coordination while, during the second stage, a child will gradually or suddenly develop severe problems with communication, language, learning, co-ordination and other brain functions. It can cause seizures, breathing difficulties and sometimes premature death.

Rett syndrome is caused by mutations in the MECP2 gene which makes a protein with a similar name, MeCP2, that is essential for proper function of neurons in the brain. When MeCP2 is missing from all cells, mice develop symptoms similar to those seen in Rett syndrome and male mice die prematurely.

The two major types of neurons in the brain are excitatory neurons, which send signals to other neurons telling them to be active, and inhibitory neurons, which stop or dampen the activity of other neurons to control the timing and rate of incoming information. These neurons must act in balance with each other for the brain to work correctly, otherwise disruptions can lead to the onset of neurological disorders.

One study in mice, published in the journal eLife, shows that expressing MeCP2 only in inhibitory neurons increases lifespan and rescues most but not all behavioral deficits.

A second study, published at the same time in eLife, shows that removing MeCP2 only from excitatory neurons in mice contributed to the onset of several Rett-like symptoms, some of which are distinct and complementary to those mediated by inhibitory neurons.

“Together, our findings show that rescuing the activity of MeCP2 in certain cell types can have a profound effect on improving symptoms,” says Huda Zoghbi, senior author of both papers and a recent winner of the Shaw Prize for her research leading to the discovery of the gene causing Rett syndrome.

Approximately one in every 10-12,000 females are affected by the disorder, while it is much rarer in males who have more severe symptoms and die early in life. The two studies showed that MeCP2 is important for both inhibitory and excitatory neurons in terms of motor function and survival, but also revealed that each type of neuron is key for distinct neuropsychiatric features.

For the first study, the team asked if expressing MeCP2 in inhibitory neurons, while the gene remains missing from the rest of the body, would be enough to prevent some or all of the symptoms seen in the Rett syndrome mouse model.

“Our data suggest that when a brain is missing MeCP2 everywhere, turning on the gene in inhibitory neurons can make the brain network nearly normal and prevent most Rett-like symptoms,” says Kerstin Ure, Postdoctoral Fellow and lead author of the study.

“However, when both normal cells and cells with mutated MeCP2 are present in the same brain, as seen in female mutant mice, the abnormalities caused by this mixture cannot be overcome just by rescuing the function of inhibitory neurons. This highlights the importance of doing future studies in female mice to better understand how Rett syndrome develops.”

Taking these new insights into account, the authors of the second paper set out to learn what aspects of the syndrome would appear or recover if MeCP2 was removed or re-expressed in excitatory neurons.

“We showed that mice lacking the gene from these neurons develop tremor and anxiety-like behaviors, abnormal seizure-like brain activity, severe obesity, and early death, which is surprisingly different from mice missing MeCP2 in inhibitory neurons,” says Xiangling Meng, a neuroscience graduate student at Baylor College of Medicine, and lead author of the second study.

“When the gene was re-expressed in excitatory neurons, the female mice were almost completely recovered. In the case of more severe males, their anxiety and tremors were rescued, suggesting that impairment of excitatory neurons by removing MeCP2 contributes to the onset of specific symptoms such as these.”

The team believes the next steps will be to investigate if drugs that improve the function of both inhibitory and excitatory neuron activity can be used for treating patients with Rett syndrome. Further studies will be focused on improving the function of these neurons in the hope of restoring the balance between them.

Zoghbi adds: “For now, we are looking at different ways of activating inhibitory neurons in the female mouse brain, including testing drugs and special channels that can activate a cell when a specific chemical is given to the mice. We hope these methods will help us refine a path forward for potential new therapies for patients.”



The papers ‘Restoration of MeCP2 expression in GABAergic neurons is sufficient to rescue multiple disease features in a mouse model of Rett Syndrome’ and ‘Manipulations of MeCP2 in glutamatergic neurons highlight their contributions to Rett and other neurological disorders’ can be freely accessed online at and Contents, including text, figures, and data, are free to reuse under a CC BY 4.0 license.

Senior author Huda Zoghbi is also Director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s Hospital, a Howard Hughes Medical Institute Investigator, and Professor of Molecular and Human Genetics at Baylor College of Medicine.

Media contact

Emily Packer, eLife
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About eLife

eLife is a unique collaboration between the funders and practitioners of research to improve the way important research is selected, presented, and shared. eLife publishes outstanding works across the life sciences and biomedicine — from basic biological research to applied, translational, and clinical studies. All papers are selected by active scientists in the research community. Decisions and responses are agreed by the reviewers and consolidated by the Reviewing Editor into a single, clear set of instructions for authors, removing the need for laborious cycles of revision and allowing authors to publish their findings quickly. eLife is supported by the Howard Hughes Medical Institute, the Max Planck Society, and the Wellcome Trust. Learn more at

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Emily Packer


Researchers Try Grindr App to Give Out H.I.V. Self-Testing Kits


Home H.I.V. self-testing kits on sale in a pharmacy. CreditÁngel Franco/The New York Times

Grindr, the gay dating app, is an effective way to get gay black and Hispanic men to try home H.I.V. self-testing kits, according to a recent study.

The small study was confined to Los Angeles, and fewer than 400 test kits were distributed, but the idea has broader potential. Grindr is used by at least five million men in 192 countries, according to its developer.

In the United States, young gay black and Hispanic men are the groups most likely to be infected with H.I.V. and the least likely to be tested for it, because they often lack health insurance and fear being rejected by their families.

In some other countries, gay men may be harassed, jailed or even executed.

The study used banner ads on Grindr to offer free test kits. Recipients received a kit in the mail, a voucher that could be redeemed for a kit at a pharmacy, or a code that would produce a kit from a vending machine in the parking lot of the Los Angeles Gay and Lesbian Center.

The test requires no blood; a swab of the gums produces results in 20 minutes.

Of the 56 black and Hispanic men who requested kits and were willing to answer survey questions, 69 percent had not been tested in the last six months; medical experts recommend that gay men who do not always usecondoms get tested every three months.

Two men learned from the kits that they were infected.

Researchers at the medical schools of Indiana University and the University of California, Los Angeles, chose Grindr rather than other gay dating apps like Scruff and Jack’d “because it was the oldest and biggest,” said Dr. Jeffrey D. Klausner, an H.I.V. specialist at U.C.L.A.’s David Geffen School of Medicine and one of the authors of the paper published in Sexual Health.

The idea of using the app to encourage home testing is “ripe for expansion” to other cities, and possibly to other countries, Dr. Klausner said.



After 15 Years Of Menopause, Mom Gives Birth!

When Allison Noyce was just 20 years old, she stopped getting her period regularly. Then, doctors gave her a devastating diagnosis — she had experienced early menopause. Noyce was told that she would never have children. About 15 years later, she went for a bike ride. She felt a sharp pain in her stomach. She had been feeling this pain for quite some time now, but after the ride, she knew something was wrong. Noyce felt like there was a lump in her tummy. She just knew it was cancer.

Noyce saw a doctor who believed the lump was a large cyst, but after a scan, the news was even more shocking. Doctors told she and her husband, Richard, that she was eight months pregnant. Because Noyce couldn’t have children, the couple never used contraceptives.

“We were overcome with emotion when the woman doing an ultrasound said I was eight months pregnant. Relief that it wasn’t cancer and sheer joy that we were having a baby,” Noyce told DailyMail.

A mere 12 days later, Noyce gave birth to Sophie, a healthy baby girl. The couple appeared on the talk show This Morning where little Sophie became a bit fussy. The parents did not care one bit. Clearly, they don’t take it for granted at all that they have the privilege of being parents, even when their baby girl throws a fit on TV!



Treating Depression: What Treatment Actually Works?

Treating Depression: What Treatment Actually Works?

SO FAR in the Learning Path, we have looked at a lot of background on what clinical depression is, how it works, and what the facts are as far as research goes. Now you will see what this knowledge leads us to know about depression treatment.

  • What are the drug treatments for depression and just how effective are they?
  • How effective are alternative approaches, such as therapy, at treating depression?

How to best treat depression?

Recent depression research shows that how we perceive our depression, what we actually think it is, is actually important in the efficacy (efficiency) of the treatment we undergo. What this means is that knowing all the facts about depression, really understanding depression, is incredibly important.

So if you have completed the Depression Learning Path this far, you will be well placed to make the most of whatever treatment you choose.

Research into treating depression

So much research has been done on depression, the right information is out there. However with so many vested interests, as well as different fields of study, it’s hard to get a clear picture of what is actually the most effective way overall to beat depression for good.

Much of what you read here is based on a massive meta-study controlled by the US government, incorporated the findings of over 100,000 individual pieces of research. The research was carried out over a fifteen year period. (1)

The research compared the use of depression medication against various types of therapy. It also looked at how effective each treatment was at preventing further episodes of depression.

By comparing this volume of depression research on a “like for like” basis, we get a pretty clear picture of the most effective way of treating depression.

Treating depression with drugs

It’s possible that, like millions of others, you may be taking drugs (antidepressants) of some kind to treat depression. Antidepressants are often the first treatment option prescribed by health professionals.

By understanding that antidepressants actually treat what is a common symptom of depression, rather then the condition itself, we can begin to understand some key facts about antidepressants, namely:

  • Why antidepressants are only effective in around one third of cases, and partially effective in another third. The other third of cases get no benefit at all.
  • Why the rate of relapse is so high when depression is treated with antidepressants alone?
  • For many people, the side effects are more unpleasant than the depression itself, so they discontinue treatment.

We’ll also consider why, if these drugs are as good at beating depression as we are told, is depression on the increase, and sufferers treated solely with antidepressants have an 80% chance of having a second episode of major depression?

If depression is making you feel really bad, the relief that antidepressants can sometimes bring can be very welcome. However, if you want to have the best chance of avoiding a relapse further down the line, it is essential you get the right kind of therapy, or skills training. We’ll look at this later in the Depression Learning Path.

The cart before the horse

One of the main reasons given for depression being described as an illness (and therefore to be treated with drugs) seems, at the least paradoxical, if not misleading.

It is reasoned by some that the high rate of relapse after drug treatment indicates that depression should be treated as a chronic disease, i.e. treatment by long term, high dosage medication.

This is the explanation used, rather than the fact that drugs do not treat depression, merely the symptoms.

Yet, if we consider:

  • The average length of depression, if left untreated is 8 months.
  • Depression medication, typically, has to be taken for 6 weeks before it is known if it is effective or not, and then continued for 6 months.
  • Citing relapse as a reason, some treatments recommend a “3 phase approach’ which can last well over 2 years.
  • Other treatments, such as a combination of cognitive, behavioural and interpersonal therapy, have a much lower rate of relapse. (We recommend that relaxation techniques are also used, to calm the emotions and allow a faster, more effective participation in therapy. It is also essential that the patient’s lifestyle is checked to ensure that their basic emotional needs are being met.)
  • Also, we should take into account the side effects of drug treatments, which we will come to soon.



Treatment for Adult ADD / ADHD

Are you an adult struggling with ADD/ADHD? There are many safe, effective treatments that can help—and treatment doesn’t necessarily mean pills or doctors’ offices. Any action you take to manage your symptoms can be considered treatment. And while you may want to seek professional help along the way, ultimately, you are the one in charge. You don’t have to wait for a diagnosis or rely on professionals. There’s a lot you can do to help yourself—and you can start today.

Medication is a tool, not a cure for adult ADHD

When you think about treatment for ADD/ADHD, do you immediately jump to Ritalin? Many people equate ADD/ADHD treatment with medication. But it’s important to understand that medication for ADD/ADHD doesn’t work for everyone, and even when it does work, it won’t solve all problems or completely eliminate symptoms.

In fact, while medication for ADD/ADHD often improves attention and concentration, it typically does very little to help symptoms of disorganization, poor time management, forgetfulness, and procrastination—the very issues that cause the most problems for many adults with ADD/ADHD.

What you need to know about medication for ADD / ADHD

  • Medication for ADD/ADHD is more effective when combined with other treatments. You will get much more out of your medication if you also take advantage of other treatments that address emotional and behavioral issues and teach you new coping skills.
  • Everyone responds differently to ADD/ADHD medication. Some people experience dramatic improvement while others experience little to no relief. The side effects also differ from person to person and, for some, they far outweigh the benefits. Because everyone responds differently, finding the right medication and dose takes time.
  • ADD/ADHD medication should always be closely monitored. Medication treatment for ADD/ADHD involves more than just taking a pill and forgetting about it. You and your doctor will need to monitor side effects, keep tabs on how you’re feeling, and adjust the dosage accordingly. When medication for ADD/ADHD is not carefully monitored, it is less effective and more risky.

If you choose to take medication for ADD/ADHD, that doesn’t mean you have to stay on it forever. Although it isn’t safe to bounce off and on any drug repeatedly, you can safely decide to stop treating your ADD/ADHD with medication if things aren’t going well. If you want to stop taking medication, be sure to let your doctor know your plans and work with him or her to taper off your medication slowly.

Regular exercise is a powerful treatment for adult ADHD

Exercising regularly is one of the easiest and most effective ways to reduce the symptoms of ADD/ADHD and improve concentration, motivation, memory, and mood.

Physical activity immediately boosts the brain’s dopamine, norepinephrine, and serotonin levels—all of which affect focus and attention. In this way, exercise and medications for ADD/ADHD such as Ritalin and Adderall work similarly. But unlike ADD/ADHD medication, exercise doesn’t require a prescription and it’s side effect free.

  • Try to exercise on most days. You don’t have to go to the gym. A 30-minute walk four times a week is enough to provide benefits. Thirty minutes of activity every day is even better.
  • Pick something enjoyable, so you’ll stick with it. Choose activities that play to your physical strengths or that you find challenging yet fun. Team sports can be a good choice because the social element keeps them interesting.
  • Get out into nature. Studies show that spending time in nature can reduce the symptoms of ADD/ADHD. Double up on the benefits by combining “green time” with exercise. Try hiking, trail running, or walking in a local park or scenic area.

The importance of sleep in adult ADHD treatment

Many adults with ADD/ADHD have sleep difficulties. The most common problems include:

  • Trouble getting to sleep at night, often because racing thoughts are keeping you up.
  • Restless sleep. You may toss and turn throughout the night, tear the covers apart, and wake up at any little noise.
  • Difficulty waking up in the morning. Waking up is a daily struggle. You may sleep through multiple alarms and feel groggy and irritable for hours after getting up.

Poor quality sleep makes the symptoms of ADD/ADHD worse, so getting on a regular sleep schedule is essential. Improving the quality of your sleep can make a big difference in your attention, focus, and mood.

Tips for getting better sleep

  • Have a set bedtime and stick to it, and get up at the same time each morning, even if you’re tired.
  • Make sure your bedroom is completely dark and keep electronics out (even the dim light from digital clocks or your cellphone can disrupt sleep).
  • Avoid caffeine later in the day, or consider cutting it out entirely.
  • Implement a quiet hour or two before bed. Try to turn off all screens (TV, computer, smartphone, etc.) at least an hour before bedtime.
  • If your medication is keeping you up at night, talk with your doctor about taking a lower dose or taking it earlier in the day.

Eating right can help you regulate adult ADHD symptoms

When it comes to diet, managing ADD/ADHD is more a matter of how you eat than what you eat. Most of the nutritional problems among adults with ADD/ADHD are the result of impulsiveness and poor planning. Your goal is to be mindful of your eating habits. That means planning and shopping for healthy meals, scheduling meal times, preparing food before you’re already starving, and keeping healthful, easy snacks on hand so you don’t have to run to the vending machine or grab dinner at Burger King.

  • Schedule regular meals or snacks no more than three hours apart. Many people with ADD/ADHD eat erratically—often going without a meal for hours and then binging on whatever is around. This isn’t good for your symptoms of ADD/ADHD or your emotional and physical health.
  • Make sure you’re getting enough zinc, iron, and magnesium in your diet. Consider a daily multivitamin if you’re unsure.
  • Try to include a little protein and complex carbohydrates at each meal or snack. These foods will help you feel more alert while decreasing hyperactivity. They will also give you steady, lasting energy.
  • Add more omega-3 fatty acids to your diet. A growing number of studies show that omega-3s improve mental focus in people with ADD/ADHD. Omega-3s are found in salmon, tuna, sardines, and some fortified eggs and milk products. Fish oil supplements are an easy way to boost your intake.

Choosing a fish oil supplement

The two main types of omega-3 fatty acids in fish oil: EPA and DHA. Supplements differ in the ratio of each. Your best bet for relieving the symptoms of ADD/ADHD is a supplement that has at least 2-3 times the amount of EPA to DHA.

Relaxation techniques: An effective treatment for adult ADHD

Many of the symptoms of ADD/ADHD can be mitigated by relaxation techniques such as meditation and yoga. When practiced consistently, these calming therapies work to increase attention and focus and decrease impulsivity, anxiety, and depression.


Meditation is a form of focused contemplation that relaxes the mind and the body and centers your thoughts. Researchers say that in the long run, meditation increases activity in the prefrontal cortex, the part of the brain responsible for attention, planning, and impulse control.

In a way, meditation is the opposite of ADD/ADHD. The goal of meditation is to train yourself to focus your attention with the goal of achieving insight. So it’s a workout for your attention span that also might help you understand and work out problems.


Yoga and related activities such as tai chi combine the physiological benefits of exercise with the psychological effects of meditation. You learn deep breathing and other relaxation techniques that help you become centered and mentally aware. By holding different postures for extended periods, you can cultivate balance and stillness. When you feel overwhelmed or out of control, you can turn to yoga techniques to refresh you and put you back in mental balance.

Therapy for adult ADHD can teach you better coping skills

Treatment for ADD/ADHD can also mean seeking outside help. Professionals trained in ADD/ADHD can help you learn new skills to cope with symptoms and change habits that are causing problems.
Some therapies focus on managing stress and anger or controlling impulsive behaviors, while others teach you how to handle time and money better and improve your organizational skills.

Therapy treatment options for adults with ADD / ADHD

  • Talk therapy. Adults with ADD/ADHD often struggle with issues stemming from longstanding patterns of underachievement, failure, academic difficulties, job turnover, and relationship conflict. Individual talk therapy can help you deal with this emotional baggage, including low self-esteem, the feelings of embarrassment and shame you may have experienced as a child and teenager, and resentment at the nagging and criticism you receive from people close to you.
  • Marriage and family therapy. Marriage and family therapy addresses the problems ADD/ADHD can create in your relationships and family life, such as conflicts over money problems, forgotten commitments, responsibilities in the home, and impulsive decisions. Therapy can help you and your loved ones explore these issues and focus on constructive ways of dealing with them and communicating with each other. Therapy can also improve your relationships by educating your partner and family members about ADD/ADHD.
  • Cognitive-behavioral therapy. Cognitive-behavioral therapy encourages you to identify and change the negative beliefs and behaviors that are causing problems in your life. Since many individuals with ADD/ADHD are demoralized from years of struggle and unmet expectations, one of the main goals of cognitive-behavioral therapy is to transform this negative outlook into a more hopeful, realistic view. Cognitive-behavioral therapy also focuses on the practical issues that often come with ADD/ADHD, such as disorganization, work performance problems, and poor time management.

Coaches and professional organizers for adult ADHD

In addition to physicians and therapists, there a number of other professionals who can help you overcome the challenges of adult ADD/ADHD.

Behavioral coaching for adult ADD/ADHD

Coaching is not a traditional form of therapy, but it can be a valuable part of ADD/ADHD treatment. In contrast to traditional therapists who help people work through emotional problems, coaches focus solely on practical solutions to problems in everyday life. Behavioral coaches teach you strategies for organizing your home and work environment, structuring your day, prioritizing tasks, and managing your money. ADD/ADHD coaches may come to your home or talk with you on the phone rather than meet with you in an office; many coach-client relationships are long-distance.

Professional organizers for adult ADD/ADHD

A professional organizer can be very helpful if you have difficulty organizing your belongings or your time. Organizers can help you reduce clutter, develop better organizational systems, and learn to manage your time efficiently. A professional organizer comes to your home or workplace, looks at how you have things organized (or not organized), and then suggests changes. In addition to helping you to organize your paperwork and bill paying, a professional organizer has recommendations for memory and planning tools, filing systems, and more. A professional organizer also helps with time-management: your tasks, your to-do list, and your calendar.



What’s the Best Treatment for Hair-Pulling Disorder?

After school, Henry would sit down and watch TV, but one hour later, his mom would discover he had been pulling his eyelashes and eyebrows. It wasn’t that he didn’t want them, he just couldn’t stop plucking them.

When his friends called him to hang out, he found excuses not to be around them. He didn’t want to face unwanted questions or comments. The embarrassment and shame were causing isolation, and his confidence and self esteem were suffering.

Henry is challenged by trichotillomania (TTM). Individuals who experience this disorder have difficulties resisting the urge to pull out their hair. It is estimated to affect between two to four percent of the American population.

Many hair pullers are not even aware they are doing it until it’s too late. They may zone out when they are bored or may pull their hair as a self-soothing behavior. Other sufferers are aware of their behavior and purposely do it to release stress. The urge is irresistible.

TTM is a chronic illness but those being challenged by it can learn skills to manage it. Besides awareness of the action, individuals also need to become aware of their feelings, thoughts, and the situations that occur before and after pulling. Triggers are different for everyone.

Research thus far has shown that the most effective treatment for TTM and other body-focused repetitive behaviors such as tics, nail biting, and skin picking is behavioral therapy, including habit reversal training (HRT). This therapy was developed in the early 1970s by Drs. Nathan Azrin and Gregory Nunn.

There are four main components for habit reversal training:

  • Self-awareness training. Individuals learn to become aware of their hair pulling and keep a detailed record of all the instances when they pull their hair. They also keep relevant details that will help them recognize patterns in their behavior.
  • Self-relaxation training. Individuals practice progressive muscle relaxation exercises.
  • Diaphragmatic breathing. Individuals add deep breathing to their relaxation skills.
  • Competing response training. Individuals learn to practice a muscle tensing action which competes with the hair-pulling behavior. Usually it involves tensing the arm muscles.

Because TTM is a complex disorder, most clinicians have discovered that besides implementing HRT they need to add CBT (cognitive behavioral therapy), DBT (dialectical behavior therapy), and ACT (acceptance and commitment therapy) components for best treatment results. For instance, Dr. Penzel, executive director of Western Suffolk Psychological Services, has added a fifth component to HRT: stimulus control. Through his research and conversations with expert clinicians, he agrees that HRT alone is simply not enough. It is not just about blocking hair pulling. Sensory aspects, environmental cues, and daily routines need to be considered to optimize the treatment for TTM.

In Henry’s case, he was exhibiting cognitive distortions about himself, others, and the world. He felt ashamed. Depression and anxiety had ensued. He had developed some routines that were facilitating his hair pulling. Treating him with HRT alone would not be effective.

Dr. Charles Mansueto, director of the Behavior Therapy Center of Greater Washington, and his colleagues have been doing extensive research for TTM treatment. They have written scientific papers and have presented their findings to various entities including the Trichotillomania Learning Center. They agree that HRT has been proven effective, but not reliable. A treatment that covers the behavioral, affective, and cognitive variables had been absent. For this reason, Dr. Mansueto and his colleagues developed the Comprehensive Behavioral (ComB) model to cover those missing areas.

This treatment uses several techniques that can help modify the deep-seated behaviors, thoughts and feelings that are associated with TTM. It is an individualized plan that covers five essential areas in individuals’ everyday life that affect their hair-pulling behavior. Dr. Mansueto and colleagues created the acronym SCAMP to facilitate remembering the five modalities:

  • Sensory: Visual, tactile, and physical urges. Can involve all five senses before and after the behavior.
  • Cognitive: Thoughts and beliefs about hair before, during, and after the behavior.
  • Affective: Emotions before, during and after. They may be positive or negative.
  • Motor Habits/Awareness: Ways that the individual’s body makes it easier to pull hair. It may be automatic or focused, or both.
  • Place: It may include the environment, location, activity, social environment, time of day, and various tools that trigger hair pulling.

As clinicians use the ComB model, they conduct a thorough assessment and functional analysis to identify the triggers in each of the areas listed above. Sufferers begin self-monitoring so that they can identify potential target components and select the intervention strategies for each SCAMP modality.

Individuals are able to choose at least two skills they will work on during the week. They then report how the skills worked for them. Adjustments are made and additional skills in another area are added. When individuals report a particular skill has not been effective, the clinician along with the individual will choose other alternatives from those modalities.

Dr. Mansueto and colleagues continue to do clinical trials and research. However, clinicians working with individuals suffering TTM and other body-focused repetitive behaviors believe the ComB model is a better option than HRT alone. It is a unique but effective alternative to what is being used in treating the disorder. It is a comprehensive approach and addresses the diverse elements of TTM. It also organizes information according to the individuals’ experiences and provides the opportunity to use a variety of therapeutic interventions.

Treating individuals with psychological conditions is not a “one size fits all” situation. Trichotillomania is a great example of how a therapist cannot just simply focus on changing the hair-pulling behavior. There are other elements affecting the behaviors, thoughts, and feelings. Habit reversal training can be effective and clinicians treating this disorder have also in the past used other approaches besides HRT.

The ComB model is an excellent choice because it’s not only comprehensive, but it’s also client-friendly. When individuals are treated with the ComB model, they feel empowered. There is no question, HRT has been a modality of choice and it will always be an option. The good news is that the ComB model provides an alternative to have a greater chance for optimal success in treating TTM and other BFRBs.


The One Thing I Want You to Know About Parenting My Child With Rett Syndrome

I sat down to write this story several times and got no further than a blinking cursor. I was stuck; how could one possibly describe in written words the life of parenting a child with severe disabilities? There are countless blogs about raising children with disabilities. So many stories, all unique, but with overlapping pieces: raising developmentally-different children, staying connected in marriage and intimacy, balancing work and home life, the fight for an inclusive community, navigating impossible medical decisions, personal self-care for parents and much more. So, while staring at that blinking cursor and having coffee with my mom, she suggested a simple starting place. “If you could share one thing with the world, what would it be?”

For my husband and me, it’s simple:

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

I’m lucky to be the mom of two daughters, Lili and Ruby. Lili is a funny, cheerful, loving 5-year-old who likes swimming, horses, books, Curious George and ice cream. Ruby is an adventurous, friendly, mischievous 1-year-old who likes sprinklers, dogs, balls, stickers and cookies (pronounced “doooookies!”). In terms of rad kids, my husband and I hit the jackpot.

Unfortunately, Lili was born with a rare neurological disorder called Rett syndrome (RS). If you are not familiar with RS, I encourage you to learn more. In a nutshell, it profoundly impacts our daughter’s ability to interact with her world. Lili has difficulty with mobility; impaired use of hands; seizures; learning challenges; scoliosis; sleep disorder; and she cannot talk. For some, RS also includes feeding tubes, heart abnormalities and pulmonary dysfunction. Several aspects of RS can be fatal.

There is no “adjusting” to RS, because just when you settle into a new phase of the disorder, it changes. It throws you a curveball, like a new medical problem or the loss of a precious skill. As my husband and I say, the only thing consistent about RS is the inconsistency. And the big rub — all of the game-changers are hard, and scary, and make it more challenging for our children to live healthy, happy, pain-free lives.

As the parents of children with Rett syndrome, we are always one step behind and can’t keep up. It’s a devastating feeling to have little to no control over your child’s physical wellbeing. We’re reminded every day that we have no control. So we remember our motto:

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

The following captures a typical day in our lives with Rett syndrome:

1 a.m.: Lili wakes, and anxiety sets in immediately. Is she OK? What’s wrong? Run through automatic checklist. Nightmare? Temperature? Hunger/thirst? Pain? Administer whatever best-guess aid we can, then try to get her back to sleep.

Two hours later, she’s still awake and on neurological overdrive, so the night-duty parent lays with her. Because, you see, this is when seizures happen. Sleep deprivation can mean seizures.

5 a.m.: She finally goes back to sleep. But your brain is wide-awake because nighttime is when the darkness creeps in. Deep in your brain. Fear, anger, sadness. You ask the universe questions you’ll never get the answers to. And you get irrationally mad at everything. Sometimes your child. Sometimes your spouse. And then you feel guilty and get mad at yourself.

5:30 a.m.: Lili’s baby sister is awake for the day. The parent at home tiredly starts the daily routine while the parent going to work helps as much as possible before departing.

7 a.m.: Lili is awake for the day, now five hours short of sleep. Time to get ready for school/therapy/doctor. Imagine doing every single activity of daily living for your child. You stretch, feed, toilet, dress, groom, pack, carry, etc. Somewhere in there you get yourself and baby sister ready. You wear sweatpants a lot.

9 a.m.: Collaborate with teachers, therapists, doctors, etc. Smile and try to function on a pitiful amount of sleep. Advocate for Lili’s needs like a protective mama bear. Meanwhile, Lili works incredibly hard. She must use all of her energy, focus and determination to accomplish the smallest tasks. She is so very brave.

11 a.m.: Head home for snacks, the bathroom, some kind of therapeutic activity and finish with video time. During video time, you play with baby sister and try not to think about the one million perpetually undone tasks around your home.

12 p.m.: Lunch time. Lili is great at making choices and expressing her preferences. She has lost her ability to self-feed, and almost all purposeful use of her hands, so you help her eat and drink.

3 p.m.: Go on an afternoon adventure.

Encounter boy at park: “What’s wrong with her?” Heart sinks. Remember he’s a curious, unfiltered child. Give your best explanation of Lili’s uniqueness to this inquisitive child. Silently appreciate his openness and wish more adults would ask and not just stare.

Encounter insensitive woman at grocery store staring at Lili, whispering to her companion. Drum up all of your restraint and courage to calmly, but assertively say, “I see you looking at my daughter. Can I help you?” But really, they break your heart and you want to cry.

Most of the time, you are immersed with your kids and feel joy participating with them in their own ways. Sometimes, the sadness sneaks in when you see other 5-year-olds riding bikes, playing with toys and telling their moms, “I love you.” They try to engage Lili but often lose interest when she can’t respond or play in like-kind ways. Ouch. You pull it together and repeatedly remind yourself, “Comparison is the thief of joy.”

5 p.m.: Spouse comes home, happy family time. Evenings are the best. They are special and you cherish them. They fill you with love, closeness and laughter.

7 p.m.: Divide and conquer. Each parent takes a girl and prepares for bed. Assist Lili with everything from bathing to jammies.

You hug her and tell her she’s special, you’re proud of her and you love her. You look at her beautiful little face with her big brown eyes and kiss her everywhere with intention, because you don’t know what tomorrow will bring.

You crawl into bed, kiss your spouse and try to sleep. The dread that comes with going to sleep is subtle and deeply ingrained at this point. But you know you need to get as much rest as possible because she may need you in a few hours. That’s why you’re in bed and it’s 7:52 p.m. Rinse, repeat.

I love my daughter fiercely and hate Rett syndrome with just as much vigor. The concept of my child preceding me in death is very real. It’s something no parent should ever have to face. And when that day comes, I want zero regrets.

If our children go to sleep at night feeling loved, completely loved, we are doing the best we can.

My husband and I have loved Lili fully and completely every day for five years. And in return, she has done the same for us. She has given us more love in her short life than some people feel over a lifetime.

And at the end of the day, it’s the most important thing. It’s the only thing we can all control.


How your mum’s early menopause can affect your fertility

A woman can predict how long she has left to conceive by checking how old her mother was at the menopause, according to researchers.

A study has found that the number of eggs a woman has left in her ovaries is lower if her mother had an early menopause.

Research: Scientists have claimed that research shows women's fertility may be affected if their mother had early menopause (picture posed by model)

With more women delaying motherhood to their late-30s and beyond, the chances of conceiving fall as the ovaries run down their stock of eggs.

In the UK, the average age of the menopause is 51, but hereditary  factors mean that the process can happen earlier in some women than in others.

Previous studies have found a link between the age at menopause among mothers and daughters.

But the latest research suggests scientists can provide a way of predicting the number of eggs left – the fertility window or ovarian reserve – in younger women.

Danish scientists looked at two physical markers of ovarian reserve and found they fell faster in those whose mothers had an early menopause.

They measured anti-Mullerian hormone (AMH) levels and antral follicle count (AFC) in daughters and compared both with the mother’s age at menopause.

Both markers reduced at a faster rate in daughters of mothers who had the menopause early.

Study leader Dr Janne Bentzen, from Copenhagen University Hospital, said: ‘This is the first study to suggest that the age-related decline of AMH and AFC may differ between those whose mothers entered menopause before the age of 45 and those whose mothers entered menopause after the age of 55.’

The results are reported in the latest online edition of the journal Human Reproduction.

Fertility: The research may provide a guide into the window a woman has to conceive

Fertility: The research may provide a guide into the window a woman has to conceive

The study involved 527 women aged 20 to 40 working at Copenhagen University Hospital.

They were divided into three groups; those whose mothers had early menopause before the age of 45, daughters of mothers having normal menopause between the ages of 46 and 54, and daughters of women having a late menopause at 55 and older.

Dr Bentzen said a low ovarian reserve may have a long-term effect that will shorten a woman’s reproductive lifespan.

Dr Nick Panay, chairman of the British Menopause Society, said previous research had strongly suggested inherited genes played a part in determining how long women’s fertility lasted.

He said: ‘It’s a complex combination of genes and there’s a lot of international research going on.

‘One of the most important questions we can ask a woman seeking information about her ovarian reserve is at what age did your mother go through the menopause?

‘Tests are being developed which look increasingly promising, but these will only be a guide.

‘If a woman wants to have a baby and is in a position to start trying then it is better to do it earlier rather than later.



The Unexpected Way I Battle My Trichotillomania- life Insurance Program

When I was 14, a family friend told me that when I noticed a split end, I should yank the strand from my head to get rid of it. I tried it and the sensation felt warm and comforting, as if I was ridding my body of a strange pain.

I was a quiet, introverted girl who felt awkward in every social environment. Pulling was the best stress reliever I had ever found. I kept pulling and soon noticed bald patches forming; ripping out my hair became a habit. I’d developed an obsessive-compulsive disorder called trichotillomania, the irresistible desire to pull out your hair — and I couldn’t stop.

The ridicule didn’t help, either. “Punk rocker,” students whispered as I walked through the hallways at school, since it looked as though I shaved the back of my head. I attempted to hide my bald patches by wearing headbands, but boys would pull them off and joke that I was Sinead O’Connor. I tried to smirk and blow them off, but the emotional pain bubbled up to my head and I yearned to pull.
Adults weren’t necessarily kinder. “Jennifer, I got lectured by the janitor last night,” one of my teachers announced to the class one day. “He said he vacuums up so much hair around your desk it broke the vacuum.” Everyone turned to look at me and laugh. I sat on my hands, my embarrassment making the urge to pull even greater. I headed straight home that day and pulled, leaving a pool of hair beneath me, then gathered up all the strands and flushed them down the toilet, trying to rid myself of the evidence.


Even athletics, which I’d enjoyed before, became emotionally painful. Once, before a basketball game organized by my youth group, I pulled my hair back and out of my face, revealing my bald spots. Girls asked if I had cancer while boys snickered and pointed. Because physical activities required me to wear my hair up, exposing my disorder, I stopped them altogether, asking my parents to get special permission for me to opt out of physical education classes in junior high and high school. Making it through each day felt taxing and I retreated even more on days I felt extra bullied, heading to my room to pull. People asked, “Why don’t you just stop?” I couldn’t. Pulling felt delicious, desirable, and easy. It was my relief from others’ cruelty.

Even after I escaped high school and its bullies, I couldn’t kick the habit that had followed me since age 14. Over the years, I tried every treatment for my OCD I could find. I visited a slew of therapists who all looked at me as if I were untreatable. I kept rubber gloves at my desk to wear as I typed. I wore hats whenever I wasn’t at work. Nothing worked.

I had all but lost hope. But on a vacation to Mexico 12 years ago, I noticed a triathlon taking place next to my hotel. As I watched sinewy, muscled athletes speed out of the water, hop onto bikes, and run at a pace faster than I ever could, I felt something I hadn’t felt in a long time: inspiration. My exercise routine consisted of solo runs on a treadmill at a local gym, with my headphones on to avoid conversation. But watching the triathlon, I thought that maybe I could become an athlete: powerful and confident. I began to visualize crossing the finish line, telling my friend, “I wouldn’t care if they were tearing down the event by the time I finish. I only want to finish.”

I didn’t even know how to swim, but I was undeterred. I signed up for lessons at a local Y.M.C.A. and drove out to a lake to practice every weekend. I spent hours dodging traffic as I ran through local streets; I purchased a fancy, expensive bike and learned to shift gears like a pro.

As I trained for my first triathlon — the Lake Pleasant Off Road Triathlon, a small event just north of Phoenix — my only goal was to cross the finish line, but I gained much more than I expected: I had found something that made the desire to pull subside. Swimming kept my hair wet, which made it harder to pull, biking kept my hands glued to the gears, and pulling while running was impossible. A two-hour workout meant a pull-free couple of hours.

I realized that had I wasted years trying to find freedom from pulling when all I needed to do was slip on a pair of running shoes, which made me sad that I hadn’t found this new hobby sooner — but also stirred an ambition in me to take my endurance training to another level. I soon joined a triathlon training group and a master’s swim team to keep me working out more and pulling less. We biked together on Saturday mornings and shared stories at reverse happy hours after Tuesday-night track sessions. Friendship followed fitness and I received invites to weddings, baby showers, and camping trips before out-of-town races. Finally, I had found a community where I felt confident and comfortable.


As my hair started to grow back, my confidence grew with it. I worked my way up to finishing an Ironman in 2009. The day I crossed that finish line was the best day of my life — the euphoria lasted for months. I remember sitting in my car on Thanksgiving a week after the race, feeling an overwhelming sense of gratitude for a body that had allowed me to accomplish something so significant. I used to hate my body because I felt unattractive without hair. Now, I love and appreciate it. I still pull a lot, but now, pulling doesn’t define me. Instead of dwelling on the past, I keep my eyes on the next finish line.