GAtherton, Author at Aspergillosis Patients & Carers Support

Clean, well-maintained wall-mounted air-conditioning unit operating in a bright living room

Air Conditioning, Mould and Aspergillosis

Air conditioning can make hot weather more comfortable and may help reduce indoor humidity. However, any system that becomes damp, dirty or poorly maintained can provide conditions in which mould and bacteria grow.

This is particularly important for people with aspergillosis, severe asthma, bronchiectasis or other respiratory conditions. Air conditioning does not inevitably expose people to Aspergillus—the condition and maintenance of the equipment are what matter.

How can mould develop in an air-conditioning system?

Air conditioners cool warm air. As the air cools, water condenses on the cooling coils and should drain safely away. Problems can develop when:

condensate collects in a blocked, damaged or poorly draining tray;
filters and internal surfaces accumulate dust and remain damp;
the unit or surrounding building has a water leak;
the equipment is left unused while damp and dirty;
maintenance and filter replacement are neglected.

Damp dust and debris can support fungal growth. Air moving through contaminated equipment may then carry fungal particles, fragments and odours into the occupied room. UK indoor-air guidance recommends regular cleaning and filter replacement to maintain ventilation performance and reduce microbial growth and bioaerosols.

Can air conditioning help prevent mould?

Yes. Correctly sized and properly maintained air conditioning can remove moisture from indoor air. This may make mould growth less likely, particularly during warm, humid weather.

A conventional air conditioner normally uses a refrigerant circuit, similar to a refrigerator or heat pump. Warm indoor air passes over a cold evaporator coil, where water vapour condenses. The collected water is then:

carried away through a condensate drain;
collected in a tank that must be emptied; or
in some portable units, evaporated again and expelled outside with the hot air through the exhaust hose.

During very humid conditions, a self-evaporating portable unit may still collect more water than it can expel, so its internal tank may need emptying.

An air conditioner must also release the heat it has removed. Fixed split systems use an outdoor condenser, while portable air conditioners usually discharge hot air through a hose fitted to a window or external vent. A unit with no refrigerant compressor and no way to release heat outside is unlikely to be a true room air conditioner.

A unit that is too large may cool a room quickly without removing enough moisture, while a poorly maintained or blocked unit may leak water or allow condensation to accumulate.

Air conditioners and evaporative air coolers are different

Some portable devices are marketed as “air conditioners,” “mini air conditioners” or “personal air conditioners” but are actually evaporative air coolers. These pass air across wet paper, pads, filters or wicks.

Evaporation can make the outgoing air feel cooler, but these devices add water to the indoor air rather than removing it. They work less effectively in humid conditions and may be unsuitable in a home that is already damp or poorly ventilated.

Their water tanks and continually wet internal surfaces also require careful cleaning and drying according to the manufacturer’s instructions. If neglected, they may support the growth of mould or bacteria.

Before buying or using a portable cooling unit, check whether it:

uses a refrigerant and compressor;
has an exhaust hose or outdoor condenser through which heat is released;
removes condensate into a drain or collection tank; or
relies on a water reservoir and wet pad to cool the air by evaporation.

This distinction is important for anyone trying to reduce indoor humidity or mould exposure.

Warning signs that need attention

Stop using the unit and arrange an inspection if you notice:

a persistent musty or mouldy smell when it is running;
visible mould around the vents or inside an accessible cover;
water dripping from the unit or collecting beneath it;
a persistently wet filter or condensate tray;
a noticeable worsening of respiratory symptoms when the unit is operating.

These signs do not prove that Aspergillus is present, but they indicate that the system needs investigation.

Using air conditioning safely at home

Follow the manufacturer’s servicing and filter-cleaning schedule. Different systems require different intervals.
Make sure condensate drains freely and investigate any water leakage promptly.
Replace disposable filters rather than washing them unless the manufacturer specifically describes the filter as washable.
Keep the area around outdoor air intakes free from compost, decaying vegetation and other obvious sources of dust and mould.
Do not fit a very dense filter unless the system is designed for it. Restricting airflow can reduce performance and cause additional condensation.
Remember that many domestic split air-conditioning units recirculate indoor air and do not provide fresh-air ventilation. Continue to ventilate the room appropriately.

A portable HEPA air cleaner may reduce some airborne particles, but it will not correct a contaminated air-conditioning unit, blocked drain or damp building.

Should someone with aspergillosis clean the unit?

People with aspergillosis should not dismantle or clean visibly contaminated equipment themselves. Opening the unit, brushing a filter or using compressed air could release accumulated dust and fungal material.

Ask someone without a respiratory condition to undertake straightforward routine filter maintenance, following the manufacturer’s instructions. Visible mould, a musty smell, internal contamination or drainage problems should be assessed by a competent air-conditioning engineer or ventilation specialist.

Tell the engineer that somebody in the property has aspergillosis or another serious respiratory condition. Ask how contaminated material will be contained and whether the person should leave the room or property while the work is undertaken.

Air conditioning in cars

Vehicle systems can also develop musty odours when the cabin filter is dirty or moisture remains around the evaporator. Have the cabin filter and drainage system checked during routine servicing. A persistent smell should be investigated rather than covered with an air freshener or deodorising spray.

At work, in hotels and while travelling

You may not be responsible for maintaining equipment at work or in rented accommodation, hotels and holiday properties. If a unit smells musty, leaks water or appears visibly dirty:

switch it off if it is safe and practical to do so;
ask for another room or working area;
report the problem to the employer, landlord or accommodation manager;
do not open or clean an unfamiliar unit yourself.

A musty smell alone cannot identify the organism involved, and respiratory symptoms can have many causes. Seek medical advice if symptoms become severe or do not settle after leaving the affected environment.

Further information

by GAtherton

Professional safely removing mould-damaged plasterboard after repairing a leaking pipe

How Can I Remove Mould from My Home Safely?

Updated August 2026

Visible mould should be dealt with promptly, but cleaning it can release spores and fragments into the air. Cleaning products can also irritate the eyes, skin and airways.

If you have aspergillosis, significant lung disease or a weakened immune system, ask someone else to remove the mould whenever possible. Large, persistent or widespread mould should be assessed and removed professionally.

Cleaning is only part of the solution

Mould grows where there is excess moisture. Removing the visible growth may reduce immediate exposure, but it will return unless the source of the damp is identified and corrected.

Possible causes include:

condensation on cold walls, ceilings or windows;
inadequate or broken ventilation;
leaking pipes, roofs or gutters;
water entering around windows or through external walls;
inadequate heating or insulation;
furniture preventing air from circulating around cold walls; and
previous flooding or water damage.

Before cleaning, photograph the affected area. If you rent your home, report the damp and mould to your landlord or housing provider in writing. Cleaning mould yourself does not remove the landlord’s responsibility to investigate relevant building defects or health hazards.

For more detailed advice, see Preventing Damp in Your Home.

When not to clean mould yourself

Arrange professional assessment or removal if:

the mould covers a large area or affects more than one room;
it keeps returning after cleaning;
there is a persistent musty smell but no obvious source;
wallpaper, plasterboard, carpets or insulation are extensively affected;
the mould followed flooding, sewage contamination or dirty water;
there is structural damp or a significant leak;
removal would involve disturbing wallpaper, carpets, ceilings or building materials; or
the person who would do the cleaning has aspergillosis, asthma, significant lung disease or a weakened immune system.

Disturbing contaminated wallpaper, carpets, plasterboard or insulation can release large quantities of spores and should not be treated as ordinary household cleaning.

How to clean a very small patch

A small, localised patch may be cleaned by someone who is well enough to do so, provided the moisture problem is also being addressed.

Keep other people away. Close the internal door to reduce the spread of spores and cleaning aerosols into the rest of the home.
Ventilate to the outside. Open a window during and after cleaning, where it is safe to do so. Do not use a fan that could blow spores around the room.
Wear protective equipment. Use waterproof gloves and eye protection. A well-fitting FFP2 or FFP3 mask can reduce inhalation of mould spores and some liquid droplets. However, these masks do not protect against chemical gases or vapours, so ventilation remains essential. See our face-mask guidance.
Choose a product intended for household mould. Check that it is suitable for the surface and follow its instructions exactly. Do not assume that using extra product or leaving it on for longer will work better.
Avoid creating spray mist. Do not breathe directly over the area. If the label permits, applying the product to a cloth rather than spraying it into the air may reduce inhalation exposure.
Wipe rather than disturb. Use a damp disposable cloth or sponge. Do not dry-brush, sand, scrape or use an ordinary vacuum cleaner, as this can spread spores and fragments.
Dry the surface completely. Mould is likely to return if the material remains damp.
Dispose of waste safely. Place used cloths, sponges and removed material in a bag, seal it and dispose of it. Wash reusable protective clothing separately and wash your hands after removing gloves.

Bleach-based mould removers

Many purpose-made mould removers contain sodium hypochlorite—the active ingredient in bleach. These products can kill and remove superficial mould from suitable hard, non-porous surfaces and may also remove staining.

However, sodium hypochlorite products remain hazardous. They can irritate or damage the eyes and skin, and their spray or fumes may aggravate sensitive airways. They may discolour or damage some materials and cannot reliably remove mould that has penetrated porous materials.

Ordinary household or thick toilet bleach is generally formulated and labelled for toilets, laundry or disinfection—not necessarily for removing mould from walls or other household surfaces. It may also contain fragrances, detergents or other ingredients. Do not improvise with toilet bleach unless its label specifically states that it is suitable for the intended surface and purpose.

Use no more product than the label recommends. Sodium hypochlorite is a broad biocide and can harm aquatic organisms, so avoid unnecessary use and follow the disposal instructions.

Never mix bleach or a bleach-based mould remover with another cleaning product. Contact with acids, descalers, ammonia and some other chemicals can release dangerous gases.

Bleach-free and “quat” mould products

Some bleach-free disinfectants and mould products contain quaternary ammonium compounds, often called quats. Names on the ingredients list may include benzalkonium chloride or didecyldimethylammonium chloride (DDAC).

Quat products can be effective on suitable surfaces and may be less likely to cause bleaching or discolouration. However, “bleach-free” does not mean harmless or environmentally friendly.

Quats can irritate the skin, eyes and airways. Evidence from people with repeated occupational exposure shows that some quats can cause sensitiser-induced asthma. Their effects from occasional domestic use are less certain, but people with sensitive lungs should still minimise exposure.

If using a quat-based product:

follow the label exactly;
wear gloves and protect your eyes;
ventilate the room well;
avoid breathing spray mist;
use only the amount required; and
follow the disposal instructions, as some quats are hazardous to aquatic life.

Never combine a quat product with bleach, a chlorine-based mould remover or another cleaner. Use one product only and keep different disinfectants stored separately.

What about soft or porous materials?

Mould can grow inside carpets, ceiling tiles, insulation, mattresses, soft furnishings, unsealed wood and damaged plasterboard. Surface cleaning may not remove growth from within these materials.

Badly affected porous materials may need to be safely removed and discarded. Washable clothing should be cleaned according to its care instructions and dried completely. Valuable or delicate items may require advice from a specialist cleaner.

After cleaning

Check the area regularly. If the mould returns, the underlying moisture problem has not been resolved. Do not repeatedly clean or paint over it without further investigation.

The safest approach is to use the least hazardous method that will remove the mould effectively, while minimising exposure to both mould spores and cleaning chemicals.

How can I find a trustworthy professional?

There is no single UK licence that guarantees competence in mould remediation. Membership logos and qualifications are useful, but they should always be checked with the organisation that issued them.

Start with an independent diagnosis. For extensive, recurring or unexplained damp and mould, consider an independent RICS-chartered building surveyor. Alternatively, look for a damp surveyor holding the CSDB or CSTDB qualification. Ideally, the person diagnosing the problem should not also be selling the treatment.
Obtain two or three written quotations. Each quotation should explain the moisture source, what materials will be cleaned or removed, how spores and dust will be contained, and how recurrence will be prevented.
Check credentials independently. Possible directories include the Property Care Association, TrustMark and, particularly for substantial water-damage or mould-remediation work, the IICRC Global Locator. Check the person or business in the relevant directory rather than relying on a logo displayed on its website.

Before appointing anyone, ask for:

evidence of suitable insurance;
relevant qualifications and recent experience of similar work;
a written survey, scope of work, price and timescale;
a method for protecting occupants and preventing mouldy dust and spores spreading through the home;
details of containment, ventilation, HEPA-filtered equipment and waste disposal where appropriate;
confirmation that the leak, condensation or other moisture source will be corrected—not merely covered with paint or chemicals;
references, guarantees and a written complaints procedure.

Be cautious about a “free damp survey” provided by a company selling one particular treatment. Warning signs include pressure selling, an immediate diagnosis based only on a photograph or damp-meter reading, recommending fogging or biocide treatment without correcting the moisture source, and promising a permanent cure without explaining why the mould developed.

Tell the surveyor or contractor that somebody in the home has aspergillosis or another serious respiratory condition. Ask how the person will be protected during the work and when it will be safe for them to return.

If the mould followed an insured leak or flood, contact the insurer before commissioning work. Tenants should normally report the problem to their landlord and obtain written agreement before arranging or paying for professional work. See our Housing Hub for further guidance.

Further information

by GAtherton

Illustration of Aspergillus fumigatus spores interacting with the bronchial airway lining beside a DNA strand representing the ZNF77 gene variant.

Lung Colonisation by Aspergillus fumigatus Is Influenced by a ZNF77 Gene Variant

Updated August 2026

Most people regularly inhale spores from Aspergillus fumigatus, but healthy airways usually remove them before they can persist or grow. Researchers have been investigating why this natural clearance appears to work less effectively in some people.

A study published in Nature Communications in 2018 identified a possible genetic factor. Researchers from the Manchester Fungal Infection Group studied a variant called rs35699176 in a gene known as ZNF77.

What does ZNF77 do?

ZNF77 helps regulate the airway epithelium—the layer of cells lining and protecting the breathing tubes. This lining is not simply a physical barrier. It also helps trap, remove and respond to inhaled microorganisms.

In laboratory experiments, researchers used gene editing to introduce the ZNF77 variant into human bronchial epithelial cells. Cells carrying the variant formed a less complete protective layer and produced increased amounts of proteins to which fungal spores could adhere.

Compared with ordinary airway cells, the altered cells allowed Aspergillus fumigatus spores to:

attach more readily to the airway surface;
begin germinating sooner;
grow more rapidly; and
produce a stronger inflammatory response.

What was found in people with ABPA?

The researchers also examined respiratory samples from relatively small groups of patients. Among 45 people with allergic bronchopulmonary aspergillosis (ABPA), the ZNF77 variant was found in nine of the 32 people whose sputum contained detectable Aspergillus. It was not found in the 13 people whose sputum PCR test was negative.

People carrying one copy of the variant also tended to have higher fungal loads in their airways. However, the study did not show that they had more severe asthma, poorer lung function or worse clinical outcomes.

Does this mean ZNF77 causes ABPA?

No. ABPA is a complex condition involving fungal exposure, airway disease, immune responses and probably several genetic and environmental influences. One gene variant cannot by itself explain why someone develops ABPA.

The study suggested that rs35699176 may make the airway surface more permissive to Aspergillus fumigatus. This could be one part of the process that allows the fungus to persist and trigger allergic inflammation in susceptible people.

Can patients be tested for this variant?

ZNF77 testing has not become part of routine ABPA diagnosis or treatment. The original patient groups were small, and larger studies following people over time would be needed to establish whether testing reliably predicts disease, treatment response or clinical outcomes.

The 2024 international clinical guidelines for ABPA use evidence of fungal sensitisation, total IgE, eosinophil counts, Aspergillus-specific IgG and characteristic imaging findings. They do not currently recommend ZNF77 genetic testing.

Why does the research still matter?

This study helped demonstrate that the airway lining actively influences whether Aspergillus spores are cleared or allowed to persist. It also identified fungal adhesion to airway cells as a possible target for future research.

Although the finding has not yet produced a clinical test or treatment, it remains an important example of how differences in our airway defences may contribute to susceptibility to aspergillosis.

For patients: having ABPA does not currently indicate a need for ZNF77 testing. Diagnosis and treatment should continue to be based on symptoms, blood tests, imaging, respiratory samples and specialist clinical assessment.

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by GAtherton

Aspergillosis Research Update: Corticosteroid Risks, Azole Resistance and Immune Recovery

Medical illustration of lungs showing Aspergillus, corticosteroid inhaler use, immune cells and research into restoring azole susceptibility. — Recent research examines corticosteroid-associated aspergillosis risk, azole resistance and immune recovery.

Research published between 21 July and 3 August 2026

Recent aspergillosis research has highlighted the relationship between corticosteroid treatment and pulmonary aspergillosis, a possible future method for restoring the activity of azole antifungals, and the importance of the immune response during recovery from invasive aspergillosis.

The most immediately relevant study found a strong, dose-related association between corticosteroid exposure and pulmonary aspergillosis. The other studies are earlier-stage research but may contribute to more personalised monitoring and new treatments in the future.

1. Corticosteroid use linked to an increased risk of pulmonary aspergillosis

A large Danish population-based study has examined whether inhaled and oral corticosteroids are associated with chronic pulmonary aspergillosis (CPA) and invasive pulmonary aspergillosis (IPA).

The researchers identified 1,351 people diagnosed with pulmonary aspergillosis other than allergic bronchopulmonary aspergillosis (ABPA). Each person was matched with five controls of the same age and sex.

Both inhaled and oral corticosteroid use were associated with an increased risk of pulmonary aspergillosis:

Lower-dose inhaled corticosteroids were associated with approximately 1.7 times the risk.
Higher-dose inhaled corticosteroids were associated with approximately 2.8 times the risk.
Lower-dose oral corticosteroids were associated with approximately three times the risk.
Higher-dose oral corticosteroids were associated with approximately four times the risk.

Higher-dose inhaled corticosteroids were associated with invasive pulmonary aspergillosis, while oral corticosteroid exposure was associated with both CPA and IPA. The association became weaker as more time passed since corticosteroid exposure.

The presence of a dose-response relationship strengthens the evidence: people exposed to higher corticosteroid doses generally had a greater risk. However, this was an observational study and cannot prove that corticosteroids directly caused every case. People requiring higher doses may also have more severe COPD or other lung damage that independently increases their risk.

An accompanying editorial by Professor David Denning argues that the findings should increase awareness of potentially fatal aspergillosis among people with COPD receiving corticosteroids.

What does this mean for patients?

Corticosteroids are important medicines that control inflammation and can prevent serious asthma or COPD exacerbations. This study does not mean that people should stop inhaled or oral corticosteroids.

Instead, it supports careful prescribing, using the lowest effective dose and regularly reviewing whether continued corticosteroid treatment is necessary. Clinicians should also consider aspergillosis when someone with COPD or another chronic lung condition develops unexplained or persistent deterioration, particularly during repeated or high-dose corticosteroid treatment.

Patients should not reduce or stop corticosteroids without discussing this with their clinical team. Suddenly stopping oral corticosteroids can be dangerous, particularly after prolonged treatment.

Read the corticosteroid study in Thorax

Read the accompanying editorial

2. Could resistant Aspergillus be made sensitive to azoles again?

Azole antifungals—including itraconazole, voriconazole, posaconazole and isavuconazole—are central to the treatment of many forms of aspergillosis. Unfortunately, some strains of Aspergillus fumigatus are resistant to one or more azoles, leaving patients with fewer treatment options.

Laboratory researchers have now investigated a different part of the fungal pathway used to produce ergosterol, an essential component of the fungal cell membrane.

They identified an enzyme called Erg7A, or lanosterol synthase, as a potential treatment target. Genetically disrupting this enzyme made resistant Aspergillus more sensitive to azoles. This effect was seen in clinical isolates with different resistance mechanisms, including mutations affecting cyp51A and hmg1.

The researchers also tested an experimental lanosterol-synthase inhibitor called Ro 48-8071. When combined with itraconazole or posaconazole, it produced a strong synergistic effect and restored azole susceptibility in resistant isolates.

What does this mean for patients?

This is promising laboratory research, but it is not yet a treatment that can be offered to patients. Ro 48-8071 also affects the human version of lanosterol synthase, so researchers would need to develop safer compounds that selectively target the fungal enzyme.

Further testing in animal models would be required before any human clinical trial could begin. Nevertheless, the study provides an interesting strategy: instead of abandoning azoles when resistance develops, a future combination treatment might make the fungus responsive to them again.

Read the study in mBio

3. Aspergillus-specific immune cells may help predict recovery

Successful treatment of invasive aspergillosis depends on antifungal medication and on the patient’s immune system recovering sufficiently to control the infection.

The OPTIFIL study examined 39 people with haematological malignancies who had localised invasive pulmonary aspergillosis. Researchers measured immune cells that recognised Aspergillus and produced interferon-gamma, an important immune signalling molecule.

These Aspergillus-specific T cells were detected in 41% of patients. Their presence was associated with better outcomes after six weeks, while their absence was associated with uncontrolled infection.

One important limitation was lymphopenia—a very low number of lymphocytes in the blood—which made the test difficult to interpret in some patients.

What does this mean for patients?

The study supports the idea that monitoring the recovery of antifungal immunity might provide useful information alongside scans, cultures, biomarkers and clinical symptoms.

In the future, this type of test might help identify people whose immune systems are recovering and those who remain at particularly high risk. It could also contribute to research into immune-based treatments.

However, this was a small study involving a highly selected group of patients with blood cancers. The test is not ready for routine clinical use and requires validation in larger and more varied patient populations.

Read the study in The Journal of Infectious Diseases

4. How immune-cell metabolism can weaken antifungal defence

A separate laboratory study investigated itaconate, a naturally produced metabolite that helps regulate inflammation during infection.

Although limiting excessive inflammation can protect lung tissue, the researchers found that itaconate can also suppress parts of the innate immune response during fungal pneumonia. This may reduce the immune system’s ability to control fungal growth.

The study adds to growing evidence that immune responses to fungal infection require a careful balance. Too little immune activity can allow infection to progress, while excessive inflammation can damage the lungs.

What does this mean for patients?

This is early mechanistic research and does not currently change treatment. Itaconate should not simply be considered “good” or “bad”: its effects depend on the infection, immune response and stage of disease.

Understanding these metabolic pathways may eventually help researchers develop treatments that improve antifungal immunity without causing damaging inflammation.

Read the study in mBio

Overall message

The clearest clinical finding from this fortnight is the dose-related association between corticosteroid exposure and pulmonary aspergillosis. It reinforces the importance of reviewing corticosteroid treatment and recognising aspergillosis as a possible explanation for unexplained deterioration in people with chronic lung disease.

The remaining studies point towards two longer-term possibilities: overcoming azole resistance by making resistant fungi sensitive again, and using measurements of antifungal immunity to understand prognosis and personalise care.

Neither approach is ready for routine treatment, but both address major unmet needs in aspergillosis care.

This update summarises recently published research for patients, carers and non-specialist healthcare professionals. Observational associations do not necessarily establish cause and effect, while laboratory findings may not translate into safe or effective treatments in humans. Some appraisal is based on abstracts and available publisher information; full-text review may refine individual details.

This information is educational and does not replace advice from your clinical team. Do not start, stop or alter corticosteroid or antifungal treatment without medical guidance.

by GAtherton

Illustration of lungs, Aspergillus and an intravenous infusion representing rezafungin research for chronic pulmonary aspergillosis

Rezafungin for chronic pulmonary aspergillosis: encouraging early evidence while clinical trial continues

A once-weekly intravenous antifungal called rezafungin is being investigated as a possible treatment for chronic pulmonary aspergillosis (CPA). It could eventually provide another option for people who cannot take azole antifungals or whose infection has become resistant to them.

Early evidence includes encouraging results from one patient with difficult-to-treat CPA, together with laboratory evidence that rezafungin is active against a large collection of Aspergillus isolates. However, the main clinical trial is still underway and has not yet reported its results.

Why are new treatments for CPA needed?

CPA is usually treated with azole antifungal medicines such as itraconazole, voriconazole, posaconazole or isavuconazole. These are taken by mouth and can be effective, but treatment commonly lasts for many months and sometimes considerably longer.

Unfortunately, azoles are not suitable for everyone. Problems can include:

side effects;
interactions with other medicines;
difficulty achieving an effective drug concentration;
liver toxicity or other complications;
the development of azole-resistant Aspergillus.

When azoles cannot be used, the alternatives are limited. Intravenous antifungals such as liposomal amphotericin B, micafungin and caspofungin may be considered, but some require daily administration and can be difficult to sustain over an extended period.

Rezafungin may offer a more convenient alternative because it only needs to be administered once a week.

What is rezafungin?

Rezafungin is a long-acting member of the echinocandin class of antifungal medicines. Echinocandins interfere with the production of beta-1,3-D-glucan, an important component of the fungal cell wall.

Rezafungin remains in the body for much longer than older echinocandins. After an initial loading dose, it can be given by intravenous infusion once weekly.

The medicine is already approved for treating invasive candidiasis, a serious infection caused by Candida. It is not currently approved as a standard treatment for CPA, and its effectiveness against CPA has not yet been established.

Encouraging experience in one patient

A case report published in JAC-Antimicrobial Resistance described the use of rezafungin in a patient with CPA and very limited treatment options.

The patient had been diagnosed with CPA in 2020 and experienced breathlessness, coughing, lethargy and repeated episodes of coughing up blood. CT scans showed progressive cavities and nodules affecting both lungs.

The patient received once-weekly intravenous rezafungin for 12 weeks through an outpatient intravenous treatment service.

During treatment:

symptoms improved substantially;
there were no further emergency visits, compared with eight during the preceding year;
the patient’s Aspergillus IgG level fell from 165 to 98 mgA/L;
CT imaging showed a slight improvement in the inflammation surrounding the lung cavities.

The treatment was also considered more convenient than an echinocandin requiring daily intravenous administration.

These findings are encouraging, but this was only one patient. A case report cannot tell us how frequently people with CPA will benefit, how long any improvement will last or how rezafungin compares with existing treatments.

The Phase 2 clinical trial

A Phase 2 study is now formally evaluating rezafungin in adults with CPA who have limited treatment options.

The international study, identified as NCT06794554, plans to include approximately 60 participants. Everyone enrolled receives rezafungin, so this is an open-label, single-arm trial rather than a comparison between rezafungin and another antifungal.

Participants receive:

a 400 mg intravenous loading dose;
200 mg intravenously once a week afterwards;
a total of 26 doses over six months.

Researchers are assessing changes in symptoms and quality of life using the St George’s Respiratory Questionnaire, together with changes in body weight and CT imaging. Safety and side effects are also being monitored.

The trial began in 2025 and is currently listed as active but no longer recruiting. No results have yet been published or posted on the trial registry. Because each participant receives six months of treatment and requires follow-up, a full analysis is unlikely to be available until 2027.

What do the laboratory findings show?

Additional laboratory results were presented at ESCMID Global in April 2026.

Researchers examined rezafungin against almost 1,000 Aspergillus isolates collected internationally over 11 years. Most were Aspergillus fumigatus, the species most commonly associated with CPA.

Rezafungin showed activity against the isolates at low laboratory concentrations, with broadly consistent results across different geographical regions. Its activity was similar to that of the existing echinocandin anidulafungin.

This supports the biological rationale for studying rezafungin in aspergillosis. However, laboratory susceptibility does not necessarily mean that a medicine will produce a meaningful improvement in patients. That is what the Phase 2 trial must establish.

Why could once-weekly treatment matter?

A treatment requiring one infusion each week could be considerably easier for patients and healthcare services than daily intravenous therapy.

Potential benefits could include:

fewer hospital or outpatient visits;
less disruption to patients and carers;
easier delivery through outpatient intravenous therapy services;
a non-azole option with fewer drug interactions;
an additional treatment possibility for azole-resistant CPA.

Rezafungin is still an intravenous treatment, however. It would not offer the convenience of taking tablets at home, and the practicalities and cost of prolonged intravenous treatment would still need consideration.

What don’t we know yet?

Several important questions remain unanswered:

How many people with CPA respond to rezafungin?
How substantial are improvements in symptoms and CT appearances?
Does it stop CPA from progressing?
How durable is the response after treatment finishes?
Which patients are most likely to benefit?
Is six months the most appropriate treatment duration?
How safe is repeated long-term treatment?
How does it compare with azoles, other echinocandins or liposomal amphotericin B?

The present trial has no control group and is relatively small, so further comparative studies may be needed even if its results are encouraging.

A promising development—but not yet a proven CPA treatment

Rezafungin is particularly interesting because it combines a different class of antifungal activity with practical once-weekly administration. The published case demonstrates that prolonged outpatient treatment is possible and may benefit an individual with difficult-to-treat CPA. Laboratory findings also confirm activity against a large and geographically diverse collection of Aspergillus isolates.

Nevertheless, rezafungin has not yet been proven effective for CPA. The results of the Phase 2 trial will provide the first structured evidence showing how patients respond over six months.

For now, rezafungin should be viewed as a promising experimental option for people with CPA who have limited alternatives, rather than an established replacement for azole treatment.

for people with CPA who have limited alternatives, rather than an established replacement for azole treatment.

Further information

by GAtherton

Older patient reviews inhalers, tablets and other medicines with a clinical pharmacist.

Are all your medicines still helping? A guide to polypharmacy and medication reviews

Reviewed: 23 July 2026

People living with several long-term conditions often accumulate medicines gradually. One is prescribed for the original illness, another to prevent complications, and others to manage new conditions or treatment side effects.

Each decision may have made sense when it was made. Years later, however, someone may be taking tablets, inhalers, nebulised treatments, injections, supplements and over-the-counter products prescribed or recommended by several different professionals.

This is known as polypharmacy. It is not automatically a bad thing: several medicines may be necessary and beneficial. The important question is not simply how many medicines someone takes, but whether the complete treatment plan remains safe, manageable and appropriate for the life they are living now.

What does polypharmacy mean?

Polypharmacy means taking multiple medicines. Some definitions use a threshold such as five or more regular medicines, while ten or more is sometimes described as extensive polypharmacy. These numbers are useful for identifying people who may benefit from a review, but they do not tell us whether prescribing is good or bad.

There are two important forms:

Appropriate polypharmacy: all the medicines have a clear purpose, provide worthwhile benefit and are being used safely.
Problematic polypharmacy: the combination may cause more harm than benefit, some medicines are no longer needed, or the treatment routine has become unmanageable.

A person taking twelve well-chosen medicines may have appropriate polypharmacy. Someone taking four medicines that interact, duplicate one another or no longer meet their needs may have problematic polypharmacy.

How do medicine lists become so complicated?

Complex treatment plans rarely appear all at once. They grow over time.

This may happen because:

different conditions are managed by different specialists;
a medicine started during an illness or hospital admission is never reconsidered;
a temporary treatment quietly becomes permanent;
a new medicine is prescribed to manage the side effect of another;
repeat prescriptions continue after the original reason has changed;
guidelines for several individual diseases are combined without considering the total burden;
over-the-counter medicines, vitamins and herbal products are not included in the main record;
the patient’s priorities, health or ability to manage treatment change.

No single clinician may have done anything wrong. The problem is that each medicine can be considered separately while nobody examines the complete picture.

More medicines can mean more opportunities for harm

As the number of medicines increases, it becomes more difficult to predict their combined effect.

Potential problems include:

side effects being mistaken for symptoms of the underlying illness;
one medicine increasing or reducing the effect of another;
several medicines contributing to fatigue, dizziness, confusion or falls;
effects on the kidneys, liver, heart rhythm or blood pressure;
duplicated treatment from different prescribers;
complicated timing instructions that are difficult to follow;
missed doses or accidental double dosing;
monitoring tests not taking place at the right time;
treatment consuming so much time and energy that quality of life suffers.

Older people may be particularly vulnerable because the way the body processes and removes medicines changes with age. Kidney or liver problems, frailty, low body weight and changes in nutrition can also alter how medicines affect someone.

However, problematic polypharmacy is not restricted to older people. Anyone with multiple conditions, several prescribers or a complicated treatment programme may benefit from a review.

When a side effect leads to another prescription

A prescribing cascade occurs when the side effect of one medicine is mistaken for a new medical condition and treated with another medicine.

For example, a medicine may cause ankle swelling, stomach symptoms, dizziness, coughing or sleep disturbance. If the original medicine is not considered as a possible cause, another treatment may be added.

Sometimes the additional medicine is entirely appropriate. But it is worth asking whether a new symptom appeared after a medicine was started or its dose changed.

A good medication review looks backwards as well as forwards:

What was happening when this medicine was started, and does that reason still apply?

Why this matters in aspergillosis

Antifungal medicines can interact with many commonly prescribed treatments.

Azole antifungals such as itraconazole, voriconazole, posaconazole and isavuconazole affect the enzymes the body uses to process other medicines. Other drugs can also raise or lower antifungal levels, sometimes substantially.

Depending on the particular combination, interactions may affect:

antifungal effectiveness;
liver function;
heart rhythm;
steroid exposure;
cholesterol-lowering medicines;
blood thinners;
some antibiotics;
medicines for sleep, pain, anxiety or mood;
immunosuppressive medicines.

Some interactions can be managed by choosing a different medicine, adjusting a dose or carrying out additional monitoring. Others mean that two medicines should not be used together.

For people taking an azole antifungal, it is particularly important that every prescriber, pharmacist and dentist knows about it before recommending something new. This includes medicines bought without a prescription and herbal products.

Medicines include more than tablets

A complete review should include everything being used regularly or occasionally:

prescription tablets and capsules;
inhalers and nebulised medicines;
creams, ointments and eye or ear drops;
injections and biologic treatments;
painkillers, antihistamines and indigestion remedies bought from a pharmacy or shop;
vitamins, minerals and dietary supplements;
herbal and complementary products;
medicines kept “just in case” or taken only when needed.

Patients do not always think of an inhaler, cream or supplement as a medicine, but these products can still cause side effects or interactions.

What is a structured medication review?

A structured medication review is more than checking boxes on a repeat-prescription screen. It is a detailed conversation between the patient and a suitably qualified healthcare professional about the complete medication plan.

NHS England describes it as a review in which the clinician and patient work as equal partners to understand the benefits, risks and alternatives, guided by the person’s needs, preferences and circumstances.

For every medicine, the review should consider:

Why was it originally prescribed?
Is there still a clear reason to take it?
Is it producing a benefit that matters to the patient?
Could it be causing symptoms or side effects?
Does it interact with anything else?
Is the dose still appropriate for the person’s age, weight, kidney and liver function?
Is the necessary monitoring taking place?
Can the person use it correctly and take it at the required time?
Does its likely future benefit justify its present burden?
Could anything be simplified, changed or safely stopped?

A review may result in fewer medicines, but that is not its only possible outcome. It may identify an undertreated symptom, improve inhaler technique, change the timing of doses, arrange overdue monitoring or replace a medicine with a safer alternative.

Who should review the medicines?

For many people, the best starting point is their GP practice. A GP or clinical pharmacist can examine the full prescription record and consider all the person’s conditions together.

Other professionals may also be involved:

Clinical pharmacists are particularly skilled in interactions, side effects, monitoring and simplifying complicated regimens.
Community pharmacists can identify possible problems and help with medicine use, although major changes may need discussion with the prescriber.
Hospital specialists should review medicines prescribed for conditions requiring specialist expertise.
Specialist antifungal pharmacists or clinicians should be involved when changes might affect antifungal treatment.
Respiratory nurses and physiotherapists can help assess inhalers, nebulised treatments and airway-clearance burden.

When several specialists are involved, one person should ideally coordinate the overall plan. A patient should not be left to decide which specialist’s medicine is least important.

When might a review be particularly useful?

Consider asking for a medication review when:

you take several regular medicines;
a new medicine is being added to an already complicated list;
you have recently left hospital;
more than one clinic is prescribing for you;
your kidney or liver function has changed;
you have developed unexplained fatigue, dizziness, falls, confusion, nausea or other symptoms;
you are unsure why you still take something;
the treatment timetable has become difficult to manage;
you have stopped taking something but it remains on the repeat list;
your health priorities or quality of life have changed;
no one has reviewed the complete list recently.

Medication should also be reconciled after a hospital admission. Hospital teams may start, stop or change medicines, and those changes do not always transfer perfectly between hospital, GP and community-pharmacy records.

Preparing for a medication review

Before the appointment, make a list of everything you actually take—not only what appears on the repeat prescription.

Include:

the medicine name and dose;
how often you really take it;
what you believe it is for;
whether it seems to help;
any side effects or practical difficulties;
non-prescription and herbal products;
medicines prescribed by hospitals or private services;
anything you have stopped or use differently from the instructions.

If making a list is difficult, bring the medicine boxes, inhalers, bottles and supplements with you. This is sometimes called a “brown bag review”. Photographs of packaging can also help during a telephone or video consultation.

Be honest about missed doses or treatments you have chosen not to use. This is valuable safety information, not a test of whether you are a “good patient”. If a treatment does not fit into daily life, the prescriber needs to know.

Questions worth asking

What is each medicine for?
How will we know whether it is working?
Which medicines are essential and which are optional?
Could any of my symptoms be side effects?
Do any of these medicines interact with my antifungal treatment?
Do I still need the same dose?
Are there blood tests, ECGs, blood-pressure checks or drug levels that I need?
Could the timing or number of doses be simplified?
If we stop something, how will it be reduced and what should I watch for?
Who should I contact if symptoms return?
Who is responsible for coordinating my overall medication plan?

Deprescribing does not mean withdrawing care

Deprescribing means the planned and supervised reduction or stopping of a medicine when its harms or burdens outweigh its likely benefits.

It should be a shared clinical decision—not an automatic attempt to cut the number of prescriptions and not a way of denying useful treatment.

Some medicines can be stopped straightforwardly. Others must be reduced gradually to prevent withdrawal effects or a dangerous return of the condition they control.

Corticosteroids are a particularly important example. Long-term systemic steroids must not be stopped suddenly because the body’s natural steroid production may have been suppressed. Some antidepressants, sedatives, opioid painkillers and other medicines may also require a carefully planned reduction.

Do not stop a prescribed medicine simply because you suspect it is unnecessary or causing a side effect. Discuss the concern with a pharmacist or prescriber and agree a safe plan.

The aim is a treatment plan that fits the person

A medication review is not only about pharmacology. It is also about daily life.

A treatment can be medically effective but still create problems if it takes hours to complete, causes intolerable side effects or prevents someone doing what matters to them. These burdens should be part of the decision alongside test results and clinical guidelines.

The central question is not:

“How can we remove as many medicines as possible?”

It is:

“Does every part of this treatment plan still have a worthwhile purpose for this particular person?”

Sometimes the answer will be to continue everything. Sometimes a dose can be reduced, monitoring improved or treatment simplified. Occasionally, a medicine that has been taken for years can be safely withdrawn.

What matters is that the complete medication list is reviewed rather than allowed to grow indefinitely—and that the person taking the medicines is fully involved in deciding what happens next.

Further information

This information is intended to support, not replace, discussions with your doctor, pharmacist or specialist team. Do not stop or change prescribed medicines without appropriate clinical advice.

by GAtherton

Medical illustration of NTM bacteria and Aspergillus fungus in lungs affected by bronchiectasis and a cavity.

NTM and aspergillosis: why are they increasingly found together?

Reviewed: 23 July 2026

People with bronchiectasis and other chronic lung conditions may sometimes be diagnosed with both a nontuberculous mycobacterial infection and a form of pulmonary aspergillosis.

This overlap appears to be recognised more often than it once was. It raises understandable questions:

Are NTM infections genuinely becoming more common?
Does NTM make someone more vulnerable to aspergillosis?
Can aspergillosis increase the risk of NTM?
Could one of the test results represent colonisation rather than active disease?
How can two complicated lung infections be treated at the same time?

The short answer is that NTM pulmonary disease is increasing in many parts of the world, and NTM and Aspergillus are being found together more frequently. However, this does not necessarily mean that one infection directly causes the other. Usually, they share the same opportunity: lungs that have already become vulnerable.

What is NTM?

Nontuberculous mycobacteria, usually shortened to NTM, are a large group of bacteria found naturally in soil, dust and water. They are related to the bacterium that causes tuberculosis, but NTM pulmonary disease is not tuberculosis.

Unlike tuberculosis, NTM infections are generally acquired from the environment rather than passed from one person to another. Person-to-person transmission has occasionally been documented in particular circumstances, especially involving some strains of Mycobacterium abscessus among people with cystic fibrosis, but this is not how most NTM lung disease is thought to develop.

Common disease-causing groups include:

Mycobacterium avium complex, often called MAC;
Mycobacterium abscessus;
Mycobacterium kansasii;
Mycobacterium xenopi.

Many people encounter NTM without becoming ill. Disease is more likely when the lungs have structural damage, mucus is not cleared effectively or immune defences are reduced.

Finding NTM does not always mean NTM pulmonary disease

NTM can occasionally be present in a respiratory sample without causing progressive disease. A diagnosis therefore cannot usually be made from one positive sputum result alone.

Clinicians bring together three types of evidence:

Symptoms, such as persistent cough, sputum, fatigue, weight loss or breathlessness;
CT changes, which may include bronchiectasis, small nodules, inflammation or lung cavities;
Microbiology, usually repeated cultures growing the same clinically significant NTM species.

Even when the accepted diagnostic criteria are met, treatment may not begin immediately. Some people have slowly changing or stable disease and may initially be monitored. The possible benefits of treatment must be balanced against its length, complexity and side effects.

Aspergillus can also affect vulnerable lungs in different ways

Aspergillus is a mould found throughout the environment. Most people breathe in its spores every day without becoming ill.

In susceptible people, it can contribute to several different conditions, including:

allergic bronchopulmonary aspergillosis (ABPA), an allergic and inflammatory response;
Aspergillus bronchitis, involving persistent infection of the airways;
chronic pulmonary aspergillosis (CPA), a slowly progressive infection that may cause cavities, pleural thickening or a fungal ball;
invasive aspergillosis, primarily affecting people with substantial immune suppression or critical illness.

As with NTM, finding Aspergillus in sputum does not automatically establish which—if any—Aspergillus-related disease is present. Symptoms, CT appearances, cultures, Aspergillus IgG or other tests and the person’s underlying health all need to be considered together.

Are NTM infections becoming more common?

International guidelines and studies from several countries report that the incidence and prevalence of NTM pulmonary disease have increased, particularly among older people and those with bronchiectasis.

However, the trend is not identical in every country or every dataset. A UK primary-care study covering 2006 to 2016 found a decline in NTM disease managed in primary care, but its authors suggested that increasingly complex cases may have shifted into specialist hospital services.

Several factors probably contribute to the wider increase in recognition:

more CT scanning and greater recognition of bronchiectasis;
more frequent and improved laboratory testing of respiratory samples;
better identification of individual NTM species;
increased awareness among respiratory clinicians;
an ageing population with more chronic structural lung disease;
more people living for longer with conditions and treatments that affect immunity.

There may also be genuine changes in environmental exposure, climate and the organisms themselves, but these influences are still being investigated. The apparent increase is therefore likely to be a mixture of more disease, better detection and changes in the population at risk.

Why do NTM and aspergillosis occur together?

The most important explanation is that both organisms take advantage of similar weaknesses in the lungs.

1. Bronchiectasis and impaired mucus clearance

Healthy airways use mucus and tiny moving hairs called cilia to trap and remove inhaled organisms. In bronchiectasis, the airways are widened and damaged. Mucus can collect, providing an environment in which bacteria and fungi can persist.

Bronchiectasis can therefore be both a cause and a consequence of repeated infection. Once a cycle of airway damage, mucus retention, inflammation and infection has developed, several different organisms may appear over time.

2. Lung cavities

Some forms of NTM pulmonary disease cause cavities in the lungs. These abnormal spaces can subsequently provide somewhere for Aspergillus to grow.

This means that NTM disease may sometimes create structural conditions that increase the later risk of chronic pulmonary aspergillosis. Studies have repeatedly identified cavitary NTM disease as an important risk factor for CPA.

The relationship can also run in the other direction. A person may already have cavities, bronchiectasis or damaged airways from CPA, tuberculosis, COPD, sarcoidosis or another condition, leaving them vulnerable to NTM.

3. Shared underlying conditions

Both conditions are more likely in people with:

bronchiectasis;
COPD or emphysema;
previous tuberculosis;
cystic fibrosis;
sarcoidosis or other causes of lung cavities;
low body weight or poor nutritional status;
immune suppression;
long-term or repeated corticosteroid exposure.

These shared risk factors can make it difficult to say that one organism caused the other. Often, both are consequences of the same damaged lung environment.

4. Treatment and immune effects

Systemic corticosteroids suppress immune responses and have been associated with increased susceptibility to both NTM disease and aspergillosis. Inhaled corticosteroids may also contribute to infection risk, particularly at higher doses, although their benefits may remain important for people with asthma, ABPA or some forms of COPD.

This does not mean that prescribed steroids should be stopped. It means that the continuing indication and dose should be reviewed periodically, especially when someone has recurrent or unusual respiratory infections.

How common is the overlap?

There is no single reliable percentage that applies to every patient group. Published estimates vary because studies involve different countries, organisms, lung diseases, definitions and levels of specialist testing.

Recent large studies suggest that chronic pulmonary aspergillosis develops in a minority of people diagnosed with NTM pulmonary disease. A Japanese database study reported CPA in 2.29% of more than 11,000 people with NTM pulmonary disease. A separate multicentre Japanese study found CPA in 3.5% of 1,304 patients. Rates can be higher in selected groups with cavities, COPD, respiratory failure, previous tuberculosis or corticosteroid exposure.

Smaller specialist studies have sometimes reported considerably higher figures, but these populations are usually not representative of everyone with NTM.

A systematic review of published NTM–Aspergillus co-infection cases found that bronchiectasis and cavities were particularly common. However, collections of published cases tend to contain the most complicated and severe examples, so they cannot tell an individual patient what is likely to happen.

Why can the two conditions be difficult to recognise?

NTM pulmonary disease and chronic pulmonary aspergillosis can cause similar problems:

chronic cough and sputum;
fatigue;
weight loss;
breathlessness;
coughing up blood;
bronchiectasis, inflammation or cavities on CT scans.

If a person with known NTM disease becomes worse, it may be assumed that the NTM has progressed. Conversely, symptoms in someone with aspergillosis may be attributed entirely to the fungal disease.

Clinicians may need to reconsider the diagnosis when:

symptoms worsen despite apparently appropriate treatment;
new or enlarging cavities appear;
a fungal ball or increasing pleural thickening develops;
weight loss, fatigue or coughing up blood becomes more prominent;
repeated samples identify another organism;
the clinical course no longer fits the original diagnosis.

This does not mean that every patient with NTM requires repeated extensive fungal testing. It means that the possibility of coexisting disease should remain in mind, particularly in people with cavities or unexplained deterioration.

Why is treatment complicated?

NTM pulmonary disease commonly requires several antibiotics for many months. Chronic pulmonary aspergillosis is usually treated with an azole antifungal such as itraconazole, voriconazole, posaconazole or isavuconazole.

Important interactions can occur between these medicines.

In particular, rifampicin and rifabutin—drugs used in many NTM regimens—can greatly reduce the amount of azole antifungal in the body. This may make the antifungal ineffective. Azoles can also affect the levels or safety of other medicines, and both treatment regimens may cause liver, digestive, visual, neurological or other adverse effects.

When both diseases require treatment, specialists may need to decide:

which condition is currently causing the greatest harm;
whether both need treatment immediately;
whether treatment should be simultaneous or sequential;
whether an alternative NTM regimen is possible;
how drug levels, liver tests, hearing, vision and heart rhythm should be monitored;
how much treatment burden the person can reasonably manage.

These decisions usually benefit from input from respiratory, infectious-disease, microbiology and specialist pharmacy teams. Patients should not stop or alter either treatment without discussing it with the prescribing team.

What can patients do?

People living with bronchiectasis, NTM or aspergillosis can help their team by:

providing sputum samples when requested;
reporting new weight loss, coughing up blood or a sustained change in symptoms;
keeping an up-to-date list of medicines and supplements;
asking whether new medicines interact with existing antifungals or antibiotics;
attending blood tests, drug-level monitoring and other safety checks;
continuing an agreed airway-clearance routine;
asking which organism the team currently believes is causing disease rather than simply being present.

Useful questions for an appointment include:

Do my results show NTM in a sample, or do I meet the criteria for NTM pulmonary disease?
Which NTM species has been identified, and was it found more than once?
Is there evidence of active aspergillosis, or only exposure or colonisation?
Have my CT scans changed over time?
Which condition is thought to be causing my current symptoms?
Do any of my medicines make treating both conditions more difficult?

The main message

NTM pulmonary disease is being diagnosed more frequently in many parts of the world, and its overlap with aspergillosis is increasingly recognised.

The relationship is not usually as simple as one infection directly causing the other. Bronchiectasis, cavities, impaired mucus clearance, immune changes and some treatments can create a shared vulnerability to both environmental organisms.

Finding either NTM or Aspergillus in a sample does not automatically prove active disease. The important task is to combine symptoms, repeated microbiology, blood tests and changes on CT—and then decide which condition, if either, needs treatment.

When both diseases are active, treatment can be challenging, but recognising the overlap allows specialist teams to plan monitoring, manage drug interactions and avoid attributing every change to a single organism.

Further information and evidence

This information is intended to support, not replace, discussions with your healthcare team. Do not stop or change antibiotics, antifungal medicines or corticosteroids without advice from the relevant prescriber.

by GAtherton

Older woman using oxygen watches a bird in her garden while holding a cup at home.

When chronic illness changes your life: loss, acceptance and finding what still matters

Reviewed: 23 July 2026

When health declines gradually, there may be no single moment when life changes. Instead, things are lost one by one: energy, independence, confidence, work, hobbies, relationships or the freedom to make plans without first consulting the body.

People living with chronic illness sometimes describe reaching a point where they wonder:

“Am I still living—or am I just existing?”

It is a difficult question, but not an unusual or shameful one. It does not necessarily mean that someone has given up. It may mean they are exhausted, grieving for the life they expected to have, or struggling to find meaning within circumstances they did not choose.

Chronic illness can involve real grief

We usually associate grief with bereavement, but people can also grieve for parts of their own life that have been lost.

This might include:

the person they were before becoming unwell;
work or responsibilities that gave them purpose;
physical abilities and independence;
spontaneity and freedom;
roles within the family;
plans for retirement, travel or relationships;
the expectation that treatment would restore their previous health.

These are genuine losses. They may not be visible to other people and there may be no ceremony or recognised period of mourning. The person is often expected to adapt and continue while the losses are still happening.

This is one reason gradual decline can be so emotionally difficult: each new change may bring back grief that seemed to have been settled.

Adjustment is not a straight line

Coming to terms with chronic illness is sometimes described as if it were a destination. Once we have “accepted” the illness, we are expected to remain calm and positive about it.

Real adjustment rarely works that way.

A person may feel accepting one week and angry the next. They may manage well until an infection, scan result or cancelled outing reveals another limitation. A good day may create hope; a setback may revive fear and sadness.

This movement between coping and struggling does not mean that adjustment has failed. It is often part of adapting to a situation that continues to change.

Acceptance does not mean liking what has happened

The word acceptance can sound passive. People may hear it as:

stop fighting;
expect less;
do not complain;
be grateful things are not worse.

But acceptance does not require approval, optimism or surrender.

It can simply mean recognising what is true at this moment, so that limited energy is not spent constantly fighting the fact that life has changed. It may allow someone to ask a more useful question:

“Given where I am now, what would make life more bearable, meaningful or enjoyable?”

Acceptance can exist alongside treatment, rehabilitation, advocacy and hope. A person can acknowledge present limitations while still asking whether symptoms could be better controlled or whether more support is available.

Quality of life is personal

From the outside, people often judge quality of life by visible activity: going out, travelling, working or managing without help.

But quality of life cannot be measured only by how much a person can do.

For one person, independence may matter most. For another, it may be relationships, comfort, creativity, faith, learning, nature, humour or remaining involved in family life. Someone whose physical world has become smaller may still experience closeness, curiosity, pleasure and purpose.

Equally, we should not romanticise severe illness. Pain, breathlessness, fatigue, isolation and dependence can genuinely make life very difficult. Telling someone to “focus on the positives” may leave them feeling even less understood.

Both things can be true: life may contain profound loss, and some parts of it may still be worth protecting.

When every day is organised around illness

Life can begin to feel like existing when most of the day is consumed by:

taking medicines and completing treatments;
clearing mucus or managing oxygen;
attending appointments and chasing results;
recovering from ordinary activities;
watching for signs of another infection;
trying to obtain care, benefits or practical support.

These tasks may be necessary, but they can allow the role of “patient” to take over almost every other identity.

It may help to ask whether treatment routines can be simplified or arranged differently. A pharmacist, respiratory physiotherapist, specialist nurse, GP or hospital clinician may be able to review the burden of treatment as well as its medical purpose.

The question is not only “Is each treatment justified?” but also “What is the combined effect of all this treatment on the person’s life?”

Creating room for something that is not illness

When energy is very limited, advice to “take up a hobby” can feel unrealistic or dismissive. The aim is not to fill every day with activity. It is to preserve some experience of choice, identity or connection.

That might be something very small:

choosing when and where to rest;
listening to music or an audiobook;
sitting outside or noticing a changing season;
having one conversation that is not about illness;
helping another person with knowledge or encouragement;
following a subject that still creates curiosity;
altering an activity so it remains possible in a different form.

Small does not mean meaningless. When illness has removed many choices, even modest acts of agency can matter.

It may be the environment—not the person—that needs to change

People are sometimes encouraged to adjust psychologically when practical changes could improve their lives.

Before concluding that someone must simply accept a restricted existence, it is worth asking:

Are pain, breathlessness, coughing, fatigue and sleep being treated as well as possible?
Could pulmonary rehabilitation, physiotherapy or occupational therapy help?
Is anxiety making breathlessness or activity more difficult?
Would mobility equipment, home adaptations or social care increase independence?
Is the treatment schedule unnecessarily burdensome?
Is loneliness contributing to the loss of meaning?
Could financial, employment or benefits advice relieve some pressure?
Has the person’s own definition of a worthwhile life been discussed?

Loss of quality of life should not automatically be treated as an inevitable consequence of disease. Sometimes there are neglected symptoms or unmet needs that can be addressed.

Sadness is understandable—but depression deserves help

Sadness, anger and grief can be natural responses to declining health. They are not automatically signs of mental illness.

However, chronic physical illness can increase the risk of depression. It can be difficult to recognise because fatigue, poor sleep and reduced activity may also result from the physical condition.

Signs that additional help may be needed include:

persistent low mood or hopelessness;
losing interest or pleasure in nearly everything;
feeling worthless, guilty or like a burden;
withdrawing from other people more than usual;
being unable to imagine anything improving;
thinking that life is not worth living;
thinking about death, self-harm or suicide.

These feelings should not be dismissed as an inevitable part of chronic illness. A GP or another trusted member of the healthcare team can help distinguish understandable distress from depression and discuss appropriate support.

Asking “what matters to you?”

Healthcare conversations often focus on test results, medicines and what is clinically possible. These are important, but they do not tell the whole story.

A different conversation begins with questions such as:

What matters most to you now?
What part of your life are you most afraid of losing?
Which symptoms or restrictions are hardest to live with?
What would make an ordinary day feel better?
What are you continuing treatment for?
Which burdens of treatment are becoming too great?
Who do you want involved in decisions about your care?

The answers may change over time. That is why discussions about quality of life should not happen only once or only when someone becomes extremely unwell.

Could supportive or palliative care help?

Palliative care is often misunderstood as care provided only during the final days of life. Its broader purpose is to improve quality of life when someone is living with a serious or progressive illness.

It can include support with physical symptoms such as pain and breathlessness, as well as emotional, social and spiritual concerns. In appropriate circumstances, it can be provided alongside active treatment rather than replacing it.

Not everyone with chronic illness needs specialist palliative care. However, when symptoms remain severe, treatment is becoming burdensome or quality of life has deteriorated substantially, it may be reasonable to ask the healthcare team what supportive services are available.

This is not giving up. It is asking the health service to pay attention not only to how long someone lives, but also to how they are living.

A worthwhile life may look different from the life we planned

There is no simple answer to the question “When is life just existing?” Only the person living that life can describe what it feels like from within.

But the question should invite conversation, not silence.

It may reveal uncontrolled symptoms, depression, loneliness, exhaustion, loss of identity or a need for different priorities in care. It may also help someone identify small but important parts of life that remain their own.

Coming to terms with declining health does not mean pretending that everything is acceptable. It means making room for grief while continuing to ask what might still be changed, supported or protected.

A meaningful life after illness may not look like the life once imagined. It can be smaller in some ways and still contain connection, dignity, choice and moments that matter.

If life no longer feels worth living

If you are thinking about harming yourself, feel unable to keep yourself safe or believe there is an immediate danger, seek urgent help now through emergency services or the nearest emergency department.

If there is no immediate danger but life regularly feels pointless or unbearable, tell someone. This could be your GP, another healthcare professional or a trusted person in your life. You do not have to wait until you are in crisis before asking for help.

Further information

This information is intended to support, not replace, discussions with your healthcare team.

by GAtherton

Two older women having a supportive conversation over coffee, one wearing oxygen tubing

Why talking to someone who understands can make chronic illness feel more manageable

Reviewed: 23 July 2026

Living with a long-term illness can be surprisingly lonely. This can remain true even when we have supportive family, friends and healthcare professionals around us.

Sometimes, however, a conversation with another person who has been through something similar changes how we feel. The illness has not disappeared and no practical problem may have been solved—but its emotional weight feels a little lighter.

Why can talking to someone who understands make such a difference?

Being understood without having to explain everything

People who have not experienced chronic illness may struggle to understand how deeply it affects everyday life. They may see individual appointments, infections or changes in treatment, but not the continuous effort taking place in the background.

This can include:

planning life around symptoms and energy levels;
worrying about the next infection or deterioration;
managing complicated treatments and side effects;
losing confidence in what the body will allow;
feeling guilty about cancelling plans or relying on other people;
trying to look well when we do not feel well.

Another person with a long-term illness may recognise these experiences immediately. We do not need to persuade them that fatigue is different from ordinary tiredness, or explain why a seemingly small change in symptoms can cause anxiety.

That recognition can be a relief in itself: someone else understands, and I am not alone in this.

Putting experience into words helps us process it

Illness can leave us carrying a mixture of fear, anger, sadness, frustration and uncertainty. When these feelings remain tangled together, they can be difficult to understand.

Talking encourages us to turn experience into a story: what happened, how it affected us and what we think or feel about it. This does not make the problem imaginary or suggest that it can be “talked away”. Instead, giving words to an experience can make it feel less chaotic and easier to examine.

A helpful listener may also reflect something back to us that we have not recognised ourselves. We may hear that we have coped with more than we realised, that a reaction was understandable, or that a problem we blamed ourselves for is a common consequence of living with illness.

Shared experience makes our reactions feel more normal

People with chronic illness sometimes wonder whether they are coping badly. They may feel they should be more positive, more productive or more grateful. They may compare themselves with the person they were before becoming ill—or with healthier people around them.

Hearing someone else describe similar fears, frustrations or losses can reassure us that our response is human rather than a personal failure.

This is sometimes called validation. It does not mean that another person agrees with everything we say. It means they recognise that our feelings make sense in the context of what we are experiencing.

We learn things that clinical appointments cannot always teach us

Healthcare professionals provide essential diagnosis, treatment and clinical advice. People living with an illness develop a different kind of expertise: knowledge of what it is like to manage that condition from one day to the next.

A fellow patient may understand practical questions such as:

How do you organise treatments without allowing them to take over the day?
How do you explain an unpredictable illness to family or an employer?
What helps when an appointment does not go as hoped?
How do you cope with waiting for results?
How do you adjust plans without feeling that illness has won?

Other patients cannot tell us which treatment is medically right for us. Individual diagnoses, medicines and risks differ. Nevertheless, their experience can provide useful questions to take back to our own healthcare team.

Helping someone else can help us too

Peer support is not necessarily divided into one person who helps and another who receives help. Often, both people benefit.

Chronic illness can make someone feel dependent or defined by what they can no longer do. Sharing hard-earned knowledge with another person restores a sense that their experience has value. Something difficult they have lived through may now help somebody else feel less frightened or alone.

This reciprocity—being able both to receive and to contribute—is one reason peer relationships can feel different from professional support.

It does not have to be a group

The phrase “peer support” can suggest a formal meeting or a large circle of people discussing their feelings. That works well for some people, but it is not the only form of support.

Helpful contact might be:

a private conversation with one other person;
a telephone or video call;
an informal conversation before or after a patient meeting;
reading and contributing to a carefully moderated online community;
exchanging messages with someone facing a similar problem;
simply listening until we feel ready to speak.

NHS England notes that peer support can happen one-to-one or in groups, in person, by telephone or online. Sometimes one conversation may be enough to help someone begin to feel better.

Not every shared experience will match our own

Finding someone with the same diagnosis does not mean that their illness will behave in the same way. People may have different underlying conditions, symptoms, test results and responses to treatment.

This is especially important in complex diseases such as aspergillosis. A treatment that was helpful, ineffective or difficult for one person may affect another person quite differently.

Personal experiences are valuable, but they are not predictions. They should help us feel informed and supported—not pressured into making the same choices.

When talking leaves us feeling worse

Peer support is not automatically helpful simply because people share a diagnosis. Some conversations can increase anxiety, particularly when they involve frightening stories, competition over who is most unwell, criticism of treatment choices or confident medical advice based on one person’s experience.

It is reasonable to step back when a conversation or group repeatedly leaves us feeling frightened, judged, overwhelmed or hopeless.

Healthy peer support usually includes:

listening as well as speaking;
respect for different experiences and choices;
permission not to share personal information;
recognition that one person’s experience may not apply to another;
clear boundaries around medical advice;
moderation or support when difficult discussions arise.

Sometimes we need distraction, ordinary conversation or time alone rather than another discussion about illness. That is not a rejection of support. It is part of recognising what we need at a particular moment.

Peer support and professional support have different roles

A fellow patient may offer understanding, companionship and practical experience, but peer support does not replace healthcare or psychological treatment.

Professional help may be particularly important if distress is persistent, sleep and daily functioning are being affected, anxiety is becoming difficult to control, or life no longer feels worthwhile.

A GP or another member of the healthcare team can help someone explore appropriate support. This might include counselling, psychological therapy, social prescribing, rehabilitation, palliative care or help from a specialist service. Palliative care is not restricted to the final stages of life; it can also help people living with serious illness manage symptoms and protect quality of life.

Sometimes the greatest relief is simply not being alone

Talking does not cure chronic illness. It does not restore lost health or provide an easy answer to every difficult decision.

What it can do is change the experience from “I am facing this by myself” to “someone else understands what this is like.”

That may sound like a small change, but when illness has become a constant presence, being heard and understood can make it feel more bearable. Sometimes one honest conversation is enough to remind us that we are still connected to other people—and that our experience matters.

Further information

This information is intended to support, not replace, discussions with your healthcare team. If you are experiencing severe emotional distress or feel that you may harm yourself, seek urgent help through your local emergency or crisis service.

by GAtherton

GAtherton

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